03/25/2024
Four years ago this month I took this selfie at the CSU Health Network, waiting to be seen while being sacred because my chest had never felt like this before. I counted myself lucky when the symptoms didn’t get worse than a mild form of this chest heaviness, a cough, and a lot of fatigue. The university shut down in-person classes 2 days later, and I (seemingly) got better a week and a half later. Little did I know what these next 4 years would entail.
That summer, after moving to Washington for my doctoral internship, I thought I was just burned out. I was really tired, and things like reading and writing felt like moving cinder blocks. But rest didn’t make it better, even though I had two months where I had minimal work commitments before internship started. “Maybe I should get some testing, maybe it’s a vitamin deficiency or something?” Then I started my internship in August 2020, and by the end of the third day, I literally couldn’t read. I looked at the screen and my brain just couldn’t make the task happen. Conversations became much more taxing, even ones that were chill and about topics I like with friends I trust. Sensory issues also popped up; at times even soft piano music felt like it was punching a literal bruise on the front of my brain. My memory went, too; one day after 20 minutes of w**d whacking, I chatted with a neighbor and I forgot my roommate’s name (we’d lived together 3 months at that point), and it was a type of forgetting I never experienced before. I spent that August going to doctors, feeling like I had post-concussive symptoms, and getting a lot of negative tests. “Seems like post-viral fatigue” one doctor said, with no formal diagnosis. Testing on my heart and lungs were much the same. All very healthy appearing.
It was a strange time. I could manage well enough to take care of my basic functioning, and my professional life was going great (seeing therapy clients was generally more nourishing than draining, and I had supervisors and colleagues I really admired and enjoyed working with). But I couldn’t even sleep without becoming exhausted; dreaming, even the most benign low stress dreams, felt exhausting to my nervous system, like it took significant energy for my brain to create and navigate dreamscapes. I took lots of naps, but they felt more like crashing than the types of naps I’d had for the first 31 years of my life. And over time, illness took greater hold. When the end of the semester came (I was working in a university counseling center), demands of the job made the work week significantly longer than 40 hours, and I caffeinated daily to make it through. When Winter break hit, I had a few days to myself, but collapse came the morning after Christmas. I thought I was dying: my chest hurt and I could barely hold myself up. I made it to the ER thanks to my roommate, and, well, at least I wasn’t having a heart attack. I was just experiencing an odd sort of system collapse from exhaustion. I spent the next week in what I came to recognize as a chronic illness flare; all the symptoms I experienced coming and going for months hit at the same time: sensory issues, cognitive issues, deep exhaustion, and general acheyness.
I tried to push through in the new year, 2021; maybe I would spontaneously start to get better as some people with Long COVID or other causes of post-viral fatigue had. More time in bed, more naps, more dedication to meditation and embodiment practices. Alas, as time went on, I’d notice more and more chest pain during my work (therapy and supervision were still manageable but meetings and paperwork were extra torturous). Then I had a client go into crisis, spending extra hours working with their family to support the process of finding the right care under extremely stressful circumstances. I made it through to the end of my clinical responsibilities but my body was done. I could barely manage daily life, talking was exhausting, sound and certain visual stimuli hurt. I had to take a leave of absence. This was late March/early April 2021.
It was hard to get my bearings. I tried to get my basic functioning right, but my body was a very confusing thing to operate. I had a very frustrating experience with a medical professional that pushed me over the edge into a crash from stress/frustration (how can some doctors *not* be aware that there are chronic illnesses caused by viral illnesses, especially well over a year into a pandemic?). That one left my speech impacted; it was strenuous to pull speech from my brain and form it with my mouth/throat, often speaking with something like a stutter but feeling slightly different. Luckily that went fully away after a week or two of rest, but it was scary and strange. One of the most difficult experiences I ever had was just feeling very alone with the illness, and I had this deep need to cry, so I went to sit outside and let it out, but my body was too tired to cry, it couldn’t muster what it needed to.
After taking a couple months off, I tried going back to finish my internship in mid June, because I was very close (over 450 of 500 clinical hours completed) and not finishing by August meant I’d need to do the whole thing over (including the months-long application process). But even going back to work 10 hours a week felt incredibly strenuous and painful on my nervous system. After a week or two I knew it was too much, and I told the clinic director I needed to quit (she was also my supervisor at the time). She talked me out of it three weeks in a row knowing exactly what it would mean for me to quit, but I was really in a worsening state. Finally, I had to muster up some strength and finally quit, but my system had already taken too much damage. All the pushing and pulling on my body and brain had piled up, and I had a pretty serious mental and physical health crash at that point (July/August 2021). Later that year, my father died unexpectedly. 2021 was a rough one, y’all.
After this, I spent my time resting as well as I could (the illness wasn’t getting better, I just wasn’t making it worse any more). After about 6 months I began to have a sense of what my new baseline functioning was, and while I was still disabled in many ways, spending much time in bed, I wasn’t having big crashes from pushing past my now very different limits. Summer 2022 was when I went to my first big social event since the pandemic started, Conscious Connections retreat here in Washington, and I began to make friends and build some sense of community. And I started to find people on Twitter, too (There’s some neat subcultures over there if you can sift through the bu****it).
In 2023 my mom got sick, also unexpectedly. While there was certainly tragedy and grief, taking care of her and the loving teamwork between my siblings and I was one of the most beautiful times of my life. My mom had a very healthy relationship with mortality, and the loving responses from family and community reflected in so many ways what a lovely person she was, and how lucky I was to have her for as long as i did.
By the time 2023 ended, I knew with certainty there was no going back to finish my doctorate, and I informed my advisor and dissertation committee of my choice. I made it literally about as far as one can go to finishing a doctorate before I got too sick to complete the tasks, completing 450 of 500 internship clinical hours (that’s on top of the ~750 clinical hours during my training) and completing my dissertation proposal and completing the qualitative interviews for it (I simply had to analyze them and write them up, but reading and writing are still incredibly taxing to my system). I’d estimate that’s somewhere around 95-98% of the work towards a doctorate given all the other coursework, clinical work, research, and training. That’s an A, right? 😉
I now live in community, I have so many growing friendships and networks of conenction, and I have so much regular nourishment in my life it’s hard to describe how lovely it is. I know at any time I could call on friends and family new and old for the support I need. I’m still ill, but my life is as rich as it’s ever been. I can’t do many of things I used to love or would want to do: going to a concert would knock me out for a week afterwards, travel is incredibly exhausting, walks/hikes have to mostly flat, slow, and short, and I think a roller coaster might kill me. Luckily I can dance as my body allows, meditation has become second nature, and I can keep up with daily living. If I want to party/stay up late I can allow myself a cup of coffee and an edible (two days of coffee in a row though and I crash hard for a couple days afterwards; I’m a tender being these days). I do social meditation/authentic relating practices with my friends and family, and my small coaching business is building slowly but surely as I continue to gauge what my system can take on and how I can teach nourishment practices in a symbiotic way.
This illness has given me no choice but to distill the basics of moment-to-moment nourishment, because anything else makes its impact known quickly. My only desire anymore is to build connections of down-to-earth nourishment and support others in doing the same. I have so much more to say about that, and my writing practice is still a muscle that’s taking a long time to restore. So while I can say that I have some things in store that I’m going to share soon, I can’t predict the way much of my work and personal life will go. For now, I can say I’m proud of my coaching business, and my sense of my practice has never felt more clear and grounded.
I can’t state how lucky I am; I think without close to a decade of meditation and co-regulation practice I could’ve ended up much sicker, just seeing how much nervous system havoc is wreaked by this illness. Many people end up bedbound and housebound by this, and unfortunately the current medical system has little help (and often makes things worse). Estimates indicate that only somewhere between 5-10% of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis fully recover; luckily many find good ways to manage symptoms and find a more functional baseline. I find myself in a lovely place of both having hope for recovery whether through medical intervention or deep care for my nervous system, and also acceptance that if this is lifelong, I can lead a love-filled and nourishing life anyways.
Often when you finish a PhD, many people move on to a Post-Doc position typically lasting 2-3 years. I sometimes joke that life gave me a Post-Doc in suffering (my Buddhist friends will find this extra funny). And I can say without a doubt it’s taught me more directly than anything else ever could. I’m in a place personally where I touch a sense of unconditional love for life more and more frequently. It’s like an engaged equanimity and natural wonder, and I wouldn’t trade it for a thing in the world.
I’m excited for this Spring, I’m excited for this Summer, and I’m excited for this life. And I’m excited for the pieces of it I get to share with you. Happy Spring Time everyone.
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