What is Wrong with Me?
On Monday, November 29th, 2021, I was sitting at my desk working and, around 9:30am, felt a wave of nausea come over me.
My first thought was “Oh, so this is what COVID feels like.” The previous week, I had been celebrating Thanksgiving with my parents, who both fell sick and ended up testing positive for the virus. On Monday afternoon, however, I received a negative rapid and PCR test. Over the next 24 hours, my symptoms intensified. I felt like my head was on another planet. I was exhausted, dizzy, and unable to think clearly. I cannot find the exact right words to describe the feeling, and I have tried many times, but it approximated the feeling in my head when I feel carsick. An intense mental queasiness.
I usually avoid doctors and hospitals unless absolutely necessary, but I was feeling bad enough that I went to the emergency room on the night of November 30th to make sure it wasn’t anything “serious”. After an EKG, some blood tests, and an IV, I was told I was not dying and sent home. At this point, I was generally confused, but assumed that I either had COVID and it was not showing up on the tests yet, or I had some other virus for which I hadn’t been tested.
Every day for the next few weeks, I expected to feel better when I woke up. That had been my only other experience with illness in the past: slow and steady improvement until one day I wake up and realize “oh great, I am healthy again!” and I promise never to take my health for granted — a feeling that usually lasts about 12 hours. This time was different.
Most days, I woke up and felt a lingering sense that something was not quite right, but — with a few exceptions — would not feel awful. Other days, I would wake up feeling good and think “I’m finally getting better!”
On days I felt relatively good, I would attempt to resume my normal life with a focus on returning to work. That, you see, was my main priority: getting back to work. I was much more worried about returning to work than I was about my health. As I saw it, my health is something that takes care of itself; I have a body with an immune system inside of it, and when I get sick it fights for me! My career, on the other hand, is something for which I have sacrificed, for which I have worked my ass off for years. My career, unlike my health, needs my full attention.
My job, by the way, was helping run operations at a ~120 person software startup. We were venture backed, growing rapidly, and in the process of raising our next round of financing. I had just been promoted to Chief of Staff. I felt as though I was finally getting to a very rewarding part of my career, being recognized and compensated for the time and energy I had invested into my work over the past 5 years. I was the youngest member of our leadership team by a wide margin and enjoyed fantastic exposure to our investors and our board of directors. I worked “reasonable” hours, was fully remote (before it was cool) and had great relationships with my colleagues. I was well on my way to a very successful and lucrative career, and, best of all, I was having some fun while doing it.
So, on days I woke up and felt half decent, I would pull out my computer and get back to work. Within 2 minutes it would be clear: something is really not right here. I could not focus, I had a hard time transitioning between tasks, and I had to re-read emails two to three times before putting together what to do with them. Sometimes I got stuck in the middle of writing an email, unable to proceed, unsure of what exactly I was doing. My attempts at work always ended the same way: me, staring out the window, trying to collect my thoughts. This is very, very odd. In the past, my ability to concentrate my attention on complex tasks was what made me successful. I had lost that ability entirely.
Although I was focused on my work, plenty of other activities left me exhausted and unable to continue: long conversations, reading, writing, and driving. On days that I pushed myself to engage in these activities for more than an hour or two, I would end the day in an exhausted heap.
During these early days, I was confused — what is happening to me?! — frustrated — why can’t I think straight?! — and anxious — should I be working right now?! — but I was not afraid. Everyone in my life assured me that I would be feeling healthy within a week or so, and I believed them.
By December 10th, after 11 days of being sick, it was clear to me that I was not getting better. I scheduled an appointment with a local internist who was recommended by a family friend. Later that night, I wrote in my journal for the first time about what was happening to me:
When I close my eyes, things feel out of sorts, jumbled. Nothing is linear. Reading is hard, not because I can’t follow the individual words, but because I can’t follow from sentence to sentence. It feels very overwhelming to trace the ideas… I guess, in short, everything is fuzzy. It feels fuzzy, too. Physically, I mean. A faint fuzz.
A few days later, the doctor heard my story and passed me along to a colleague, an internist who had begun focusing almost entirely on caring for patients with long-term COVID symptoms. The second doctor seemed to think that given the timing and nature of my symptoms, it was likely that what I was experiencing was somehow related to COVID. The cognitive symptoms I described sounded exactly like some of the other patients she was treating. However, not wanting to miss another potential cause, we set off to explore other possible explanations for my symptoms.
Over the next several months, I took 83 blood tests, had 3 sessions of acupuncture, underwent an MRI, added several supplements to my routine (Vitamin D, Vitamin B-12, methyl-folate), went through a course of doxycycline (to treat for a possible recurrence of Lyme Disease, which I had when I was 10), and considered (although passed on) taking a cocktail of 8 somewhat intense off-label medications (including an SSRI and the famous ivermectin).
Throughout the journey, I moved no closer to an understanding of what was happening to me. In fact, I moved further from the answer. I tested negative (multiple times) for the COVID antibodies that are associated with a past infection of the virus, meaning I had never had COVID. None of the other possibilities we explored — a recurrence of Lyme disease or Mono (both of which I had as a kid), vitamin D deficiency, thyroid issues, some other tick-borne virus — led anywhere.
None of the doctors with whom I spoke had much optimism about my situation. There was a lot of “hmm”ing and “you could consider”ing. Perhaps their ambivalence was because none of the possible explanations had an obvious cure. I learned early on in the process that I had found myself in a dark corner of Western Medicine. A corner that is occupied by illnesses such as ME/CFS, chronic Lyme, chronic Mono and even IBS. And now by long Covid. We do not know what causes any of these illnesses, much less how to cure them. And because not knowing makes us uncomfortable, we hide them; we brush past them; we deny them. Part of my hope in sharing my story is to shed a small bit of sunlight onto this dark corner and what it feels like to find yourself unexpectedly thrust into it. From my journal in December:
There is so much uncertainty. I’m overwhelmed by it, which makes me feel like shit. I’m having a hard time finding joy right now.
After about two months of being sick, I stopped expecting to feel better when I woke up. At this point, my “condition” was baked into my everyday routine. It touched every part of my life. I still was not working and had mostly given up trying. In March, an MRI of my brain came back clean, which was a massive relief but also led to feelings of confusion and uncertainty. My brain certainly didn’t feel clean.
A week later, I visited a Neurologist to review my symptoms and MRI scan. A young doctor with no interest in making small talk or eye contact assured me that my brain was completely healthy, and dismissed the notion that COVID or another virus may have anything to do with my symptoms. She suggested I look into either a sleep study or depression as the possible cause. When I told her that I was sleeping well and did not feel depressed, she was unmoved. Okay then… If this brain doctor says so…
After this appointment, self-doubt, already a common presence in my life, took center stage.
How am I feeling? Maybe I am depressed?! Is this all in my head? Am I making this up? WHAT IS WRONG WITH ME?!
These questions flew in the face of everything I knew myself to be: healthy, hardworking, and happy. But I could not help but to ask them. I was suffering, and yet I had no diagnosis. Nor did it seem I was getting any closer to one.
This meant that not only did I have no hope for a treatment plan, but I also did not have a framework within which I could understand everything that was happening to me. This is one of many hidden benefits of a diagnosis that I did not appreciate until I was without one. I did not have a community to share my struggles. I did not have an opponent against which I could rally myself. I was, in my illness, very alone.
Throughout this period, I did not know how to talk to others about what was happening to me. I am a man, which is to say that I have been trained in the art of pretending everything is okay even when on the inside, everything feels not okay. To most outsiders, I seemed perfectly fine. I was able to smile through dinners, pretending that my head wasn’t swirling. While it felt necessary (who wants to be a downer for months on end…), my ability to hide how I was feeling from other people did backfire. If everyone else thinks I seem fine, then am I? The disconnect between how I felt on the inside and how others perceived me on the outside exacerbated my feelings of loneliness.
Throughout all of these complex thoughts and emotions — I was often crudely reminded of reality: I am sick. In a sad way, I came to find relief in the feeling of sickness. It was certain, when so much else that was happening inside my head was uncertain. Feeling sick is better than feeling crazy. And so, at times, when I found myself struggling to read a book or when my mind would go completely numb after a 30 minute conversation, I would think: Good. There really is something wrong with me. In this way, my sickness and my wellness became intertwined. I craved feeling sick because it validated all that I was losing and all that I could not understand.
While it may sound counterintuitive, accepting and embracing my illness on my own terms was an important step on my journey to wellness. After months of searching externally for diagnosis, reassurance and treatment, I accepted that I may never get any of those. And that was okay. I did not need a doctor’s prescription in order to take care of myself.
So much was unknown, but I knew several things for certain. First, my conversations with doctors were losing momentum. The only concrete medical option that I had in front of me was a controversial, experimental drug cocktail. Second, I was not getting worse and was not going to die from this. Third, and most importantly, I knew how to live with whatever was going on inside of me. I had been doing it for several months, and I knew the things that made me feel better and the things that made me feel worse. I resolved to start there.
I began taking care of myself in a way that I have not before. I adjusted my diet dramatically — cutting down on meat, processed foods, caffeine, and alcohol. I established a daily, intense meditation practice. I went for walks, did yoga, and cooked healthy meals. That simple routine became my whole life. My world shrunk tremendously. I removed everything that did not seem absolutely necessary for my well being. I found, happily, that my smaller world had an urgency and primacy to it that my old world had lacked. I felt as though I was restoring the natural order to my world.
My meditation practice allowed me to calm my mind and process the dramatic changes happening in my life. I retreated deeply into myself in order to see very clearly what was happening. And I discovered something transformative: everything is okay; I’m okay. Deep down, beyond the endless chattering of my mind, I was still the same person. My light still burned, and it burned brightly.
I began to trust myself. This allowed me to find peace amidst chaos. I began to appreciate myself on the basis of my being not my doing. I had trained my productivity muscles so hard for so long. I allowed them to atrophy, and the world became a more beautiful, mysterious place.
I focused intently on the parts of me that were fully healthy — my body and my heart and my soul. There, I found inspiration. I resolved to face my adversity directly. I watched carefully what was happening. I tended to myself. I became, over time, in awe of all that was happening.
During this period, in the middle of Spring, I started to slowly feel better. That is not to say that I was cured. I still struggled daily with cognitive “discomfort”. But I began to get much better at managing my energy, and when I did suffer, I felt that somehow my suffering had meaning. That it was taking me somewhere important. I asked myself, “If I can face this adversity calmly and resolutely, then what can I not do? And the thought made me smile.
The quasi-isolation that I had entered, approximately two months long but summarized in a few short paragraphs above, was a necessary part of my healing process, but it was not sustainable. I was slowly drawn out of my deep retreat, largely by my girlfriend, to whom I owe everything. She is the only person who truly understands the extent to which this illness knocked me out, as she was the one who held me late at night when my head throbbed and I was hardly able to speak. And so it was only she who could urge me to come out of my shell and rejoin the world. To begin opening up about what was happening inside of me and what I wanted to do about it.
When I thought about what to do next, I saw a big question mark. Where the hell does one go from here? Being ill had stripped me down to my most essential. Regardless of where I went next, I committed to maintaining the intentional simplicity that I found so healing. I committed to continuing the fight against my deep-seated urge to focus on money and productivity. I committed to focusing on the things in my life that brought me energy and clarity. This drive was accelerated by the people and lives around me.
I looked around me that Spring and I saw the most beautiful things in life: my sister bringing my nephew into the world; my partner demanding, amidst all the turmoil I put her through, that I do whatever it is that makes me happy; my parents supporting and caring for me now as they did when I was a child; my friends marrying their best friends.
I also saw the saddest things in life: my friend’s father passing away too young from cancer; another friend’s younger brother passing away in a sudden accident.
And I realized, this is why I am here: to be present to these gifts and tragedies, to take the love and support that I receive and to share it with others.
And so, as I watched my career slip from my grasp, this massive weight that I had been pulling up the side of a cliff for so long, as it slipped out of my hands and tumbled, end over end, until it came to a crash at the bottom of a ravine and disappeared into a cloud of dust, as I watched this in a stunned silence that still to this day feels like a dream — could something with so much life and energy invested into it come to an end with such a whisper? — I answered: yes, of course, for there are more important things in life.
On July 6, I formally resigned from my job. My FMLA leave period had come to an end, and, for so many reasons, I was no longer fit to serve in my old role.
It had now been 8 months since I had worked. I needed a source of income, and I felt well enough to begin looking for part time work.
I wanted to find work outside and with my hands, and so I decided to relocate from New York City to the Berkshires, in Western Massachusetts. Within a week, I found a job with a local stonemason, Stu. He is a master of his craft and I, now, am his Tender (the perfect job title). The work suits me. I am learning something new, how to build, which challenges me in a friendly manner. Much to Stu’s dismay, I average about 25 hours a week.
I love the job for its simplicity. When I show up at work in the morning, all of the work I have to do is right there in front of me. I can see it and touch it in the world, and so I am not forced to store it in my brain or on an endless to-do list. When I am not working I am not working; my mind can truly rest.
I still have moments where I feel “fuzzy”, but they are getting fewer and further between. In order to manage my mental energy, I continue to look after myself very carefully. I limit my socializing, my drinking, my time spent on taxing cognitive tasks, and my bedtime.
This level of vigilance can be tiring and frustrating. I am over it. I would like to, for at least a few days, run free. But I have taken a few steps down that road, and I know where it leads, backwards, to a dark place.
I no longer indulge in wondering exactly what happened to me or if I will ever be symptom free. Those questions feel above my pay grade, just out of my purview. But, for the curious reader, I will dabble in a closing speculation: I believe that whatever happened was related to my prolonged COVID exposure in the week leading up to my symptoms beginning. And I believe that someday, my symptoms will dissipate to the extent they are not noticeable and no longer interfere with any aspect of my life.
If that day does not come, that is okay with me. Everything that has unfolded since last November has been a gift.
Lastly, some final reflections. If you made it this far, you’ve only got another few paragraphs…
What have I learned?
I have learned how to live. I have confronted loss and confusion and it has not broken me; it has emboldened me. I have learned that from adversity can come profound growth. I know this now as a fact, rather than as a platitude. I have lived the process, and so it is real to me. I can see it and feel it in my life. It motivates me. It is why I get out of bed in the morning. I want to see what obstacles life may throw at me next, and how directly I may meet them.
My life has not gotten easier. In fact, it has surely gotten harder. But that’s a good thing. That means I am really in the fight. A year ago, I was in my 20s and everything was easy for me. I was on a well-trodden path towards comfort and success. It was all sunshine and rainbows. Today, I am in my 30s and, on paper, I would forgive you for thinking that my life has “fallen apart.” But that would be to overlook the reality: I am more me. I am more proud of my life today. There is more Sam-ness in it. I am happier and freer, and I wouldn’t trade that for the world.
What advice would I give to others?
My journey is very unique, but I know that it contains universal truths. That is part of why I shared it. If you found yourself connecting to any part of the story, I hope that you will reach out to me and share what this was.
I do have one specific piece of advice that I believe applies to everyone: Slow down. A fire needs oxygen in order to burn. Just so, life needs stillness and quiet. Without them, there can be no understanding.
Oh and one last thing!
Moving forward, as the Mason season comes to a close, I am launching my own practice as a career and life coach. I am already working with clients, and find that the work is aligned with my values and fills me with a sense of purpose.
My job as a coach is to create an environment that allows my clients to deeply explore their lives. I work with motivated, thoughtful, and inspired individuals who want to live fuller, freer lives and are bold enough to ask for help on their journeys. There is nothing else I would rather be doing.
If you would like to connect or if you have any questions about what I’ve written, please reach out to me at samueledailey@gmail.com.
