Sick. A Beginning.

I'm sitting at my computer, typing this--my first blog post. I have been trying to write it for over a month now, making progress sometimes a few sentences at a time, trying to figure out what on earth to say. These days, I have a lot to celebrate. I made this website, and Summer and I have recorded our first episode of the podcast--hopetripping: Conversations on Healing--a couple of weeks ago. Sure, it has taken us a year to do what might take others a couple of weeks. And sure, it has taken me over a year since my last major setback to get back to being able to sit at a computer and to manage to write down my thoughts for more than a few hours a week. Lately, brain fog has been pretty dense, usually rolling in by the afternoon. But I can still do a bit more in the morning, and that is, to me, at least today, delightful. I think you all may be the only ones who truly understand how hard-won it is that we are able to be here doing any of this at all.

There's nothing extraordinary about my story. As diverse as the details of our individual stories are, we are--in so many of the most essential ways--the same. We were born all across the world, we grew, we learned things, we danced, we played, we laughed, we weathered blows and setbacks and stressors of the world, we contributed and connected, we pushed and achieved. We were, by every outward measure, resilient and productive beings in the world.

Until, suddenly, we weren't. At some point, I imagine a different point for each of us, we took a hit that we just didn't bounce back from. Whether a virus or physical trauma or emotional trauma or a major surgery or giving birth to a child or a new diagnosis of autoimmunity or something else altogether, after that hit our bodies stopped being able to adapt to the rigors of life. For some of us, our bodies stopped being able to walk, maybe even to stand, to work or build or create or care for loved ones. We suddenly could barely care for ourselves. Most of us found our minds trapped, exhausted and unable to focus or remember or even make simple decisions. And before we knew it, we were each living barely a life, stuck in the cage of our exhausted body. And from any cage, it's easy to forget what life looked like before. It's easy to forget who we were before. And if stuck in that cage long enough, it's easy to forget how to live at all.

A virus took me out in January of 2018, years before long-covid had validated the phenomenon of post-viral syndromes in the medical community. I had never been sick so long from just a cold, and, like all committed professionals, I worked through most of it. I prided myself on being a workhorse. I prided myself on my importance to the world, to the hospital, to the team I worked with, to my patients. I prided myself on the illusion of indispensability.

One week of illness became two weeks. Then three. Then I fell ill again. I had just moved into a new apartment. My work weeks averaged 60 hours or more. I rationalized as I found myself falling asleep in my dinner that everything would take care of itself in time. I was so used to just counting on my body to do what I wanted it to, rarely taking steps to support its wellness, that I hardly noticed I wasn't exercising anymore or that long hours of charting would take me even longer than usual, my focus now much less efficient. I spent weekends on the couch instead of hiking my usual 8-12 miles along the California coastline. I worked hard and I came home, dog-tired and on the couch or in bed--but even resting didn't really help.

The year unraveled from there. By August, after another series of strange fevers and unforeseen setbacks and increasingly irregular blood pressures, I was struggling to make it through a day of work. I recall the last straw: the end of one workday, my last workday, when I couldn't even really see the computer screen at work because my eyes were so fatigued and blurry. I felt like a cement wall had been inserted between my brain and the world, and as hard as I tried, I couldn't force my thoughts through it. Or around it. I could barely even form a thought. My body and brain had too little left to manage even the pared-down version of life I had settled in to.

Without a functioning brain, a physician is a pretty useless thing, and I was placed on medical leave that day, with the plan for a couple of weeks off to "rest," the inherent suggestion from my PCP that I was simply "too stressed." The neurologist I saw for marked brainfog (where I tested surprisingly poorly on a test of cognition screening for dementia) suggested I go home and do yoga. Rest did little, and a month or so later I was diagnosed with ME/CFS at an academic medical center specializing in the diagnosis, later confirmed by a phone consultation with an ME/CFS expert in New England. I was lucky to be close to specialists who had validated the profound malfunctioning of my body, but that didn't mean my regular system of doctors--the ones directly providing my care within a large health care system, doctors I had worked alongside for years--believed me. I remember their looks of pity, sometimes anger and frustration. I remember messages behind the scenes when I would reach out for care, focusing on my mental health rather than taking seriously the physical struggles I faced. I remember the shame I felt when facing their disbelief. And I remember thinking if they don't believe me, a physician, one of their own, how does anyone else navigate this? How do they have even a chance to find help?

I didn't know then that I would have to become the hero of my own story. I didn't know then how limited the available treatments--even those offered by very well-meaning and highly educated specialists--would be. I didn't know then how hard it would be to navigate all of the internet claims of quick-fixes and magic pills--for a staggering price, of course. Even as a physician, I didn't know how to make sense of so much competing and conflicting advice that so often left me overwhelmed and unable to make a move in any direction. I didn't know how hard it would be when I did find things to help to make the changes in my life that would move me a little closer to wellness. I didn't know how hard it would be to have no hand to hold, especially in those early days when I didn't even really know how to comfort myself. I didn't know that what I was going through wasn't just one thing to be fixed, or that I would be piecing together the puzzle of my return to health for years.

Summer and I are here because we know how lonely it is out there. We know every bit how terrifying it is when our bodies just suddenly stop working, so often without explanation. So often without understanding from others. So often in ways we can't even understand. And we know what it is like to despair, to want to give up, to just keep sinking down. And we know what it took to slowly, inch by inch, in time, start to swim back toward a beautiful day's light.

We are here.

We are in this together. Even though our illnesses are so often invisible to others, we see you all. We know your struggle, and we are here to find our way through illness--back to a splendid wellness--together. We are here to paint a new picture with you, with anyone who wants to join us, of what is possible for recovery.

Welcome.