Can you control your health?

No. But in some ways, yes. But also? No.

The Tonic is a lighthearted, heavily resourced newsletter for folks interested in learning about long COVID, ME/CFS, and other chronic illnesses. Come for the info; stay for the whimsy. Or vice versa.

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The complicated question of control

“We have no control over what happens to us; we have enormous control over what happens to us.” - Frank Bruni

In his book The Beauty of Dusk (wish list gifted to me by my friend

Paula Sarro

!), Bruni, a longtime columnist for the New York Times, discusses how his life changed after a rare stroke blinded him overnight in one eye. The changes he walks us through went from sweeping and existential, including the increased chance of him losing vision in his other eye and what life would be like with total vision loss, to quotidian adaptations that amounted to mere inconveniences, such as navigating his way around a keyboard as a writer and listening to more audiobooks than reading.

Bruni is a beautiful, gifted writer, and so much of what he writes about in Dusk is relatable to anyone who has experienced a life-altering health condition. The aspect that resonated with me the most was the feeling of invincibility one has in the “before times” vs. the vulnerability and humility that comes with the “during and after.” The problems or so-called problems we fixated on before can seem trite and trivial compared to our new set of actual problems.

When COVID was beginning to take over our minds and our bodies in early 2020 (it was actually in many places earlier than that, we now know), I remember thinking, “I’m not afraid of this virus. I’m one of the healthy ones.” In a twist of cruel irony, the day before my first symptom (but many days after being unwittingly exposed), I recorded a video for the domestic violence shelter staff I helped managed in which I both applauded all of their hard work and also stated that I wasn’t afraid of a virus. I told them we would all gather to toast one another once this was all over.

Oh boy, was my crystal ball BUSTED that day.

So, yeah. I was 44 years old back then. I ate a mostly healthy, Mediterranean diet (mostly plants and some seafood). I enjoyed exercise and did it most days of the week - cardio DVD’s, weightlifting, walking/jogging. Baldy and I were big hikers. I played competitive volleyball for over 32 years, from the age of 12 until maybe two weeks before lockdown. I was taking tennis lessons.

Because of all this, I thought I was in control of my health. Invincible. But also, I considered myself smart, and smart people would do all the right things to avoid coming into contact with this nasty virus. And if I did happen to cross its path? I’d blow my nose a few times and swat it away like a pesky little drosophila (fruit fly).

Of course, I had heard stories of youngish, healthy folks getting cancer or having heart attacks or aneurysms. I knew on some level that something undetected in my body could take over at any time. But I did not live my life in fear of that. I subscribed to the ableist notions of, “work hard, exercise, eat right, get enough sleep, see your doctor, and you’ll be fine.”

I don’t need to tell you what we now know about how much smarter this novel virus was than many of our immune systems, for even those who ‘recovered’ from acute COVID-19 and didn’t become long haulers will likely see long-term organ and vascular damage (that they may never attribute to COVID, but that’s another story for another day).

The virus got in, likely while I was at work (I had a known exposure), and it did not care how invincible or smart I thought I was; its job, like all viruses, was to wreak havoc and survive.

Even after my doctor told me, “it sounds like you have COVID; assume you have it, and quarantine,” I kept trying to be smart. I reasoned that, since I was working from home and had access to places to rest if needed, I’d keep working. And those were some loooong, challenging days. We were trying to set up our hotline and crisis services to operate essentially out of staff’s homes (via phone and video), as well as keeping our emergency shelter residents and staff safe through the early days. It was probably the most stress I’ve ever had at work, and that’s saying a lot, since on a daily basis, my job involved helping victims stay alive when their abusers were hurting them and threatening to kill them.

I thought having a couch to rest on in the middle of a workday would give me the control I needed over this evil virus*. And maybe it would have, except that in those first two weeks, I took only one true sick day and on the other days, I hardly accessed my couch at all.

*This was a ridiculous thought; a vestige of my four decades of overachiever mentality and over two decades of capitalism having a stranglehold on me and most other Americans I knew. Rest must be earned, right? Except even if that were true, hadn’t working my ass off for over 25 years meant that I’d earned it by then? (side note: I’d also worked through eight years of chronic, near daily migraines from 2010-2018, taking fewer sick days than fingers on one hand. So why should I be surprised? I, like so many others, was the sacrificial lamb to The Man™️, even if that man was at times a woman).

These neural pathways of “work-til-you-collapse” and “if you do X, Y, and Z, then A and B could never possibly afflict you” were such deep grooves, so tightly fused together that when my body not only did not recover fully from COVID but in fact got even sicker with whatever long COVID was, the inevitable question that emerged was:

This shouldn’t have happened to someone like me.

Which of course begs the question, “well, just who then should this be happening to?”

In small part, I blame the medical establishment and the media, both of which sent the message in the early days that most people had nothing to worry about with this virus, thinking that they knew how all coronaviruses acted based on how the common cold version did. That it was smokers and those with pre-existing health conditions like asthma, immune deficiency, heart disease, diabetes, and obesity that might have to worry, but not “us.”

How many of us breathed a sigh of relief when we heard this list and felt assured by the fact that we weren’t on it?

We humans are inherently self-interested creatures. Even if we are altruistic sorts, we generally think first of ourselves. I’m not suggesting that it isn’t natural to feel this kind of relief that we would be the ones to dodge this particular bullet. But what does it say about the way we think and feel toward those who were and are on that list? That they are somehow deserving of their fate should the virus happen to befall them?

Maybe karma exists, and just maybe it smacked down some of us who both thought we were invincible, smart, and in control AND that people who weren’t deserved to suffer?

Maybe it’s the cruel irony of karma that those of us long haulers not previously on that list are now just as vulnerable, just as fragile? In short, many of us are now on that list.

thanks, Lizzo

Spend enough time in long COVID and ME/CFS social media groups and chats, and you’ll learn that, along with some who were deemed vulnerable to these conditions, there are thousands if not millions who also, like me, “had their lives together,” were athletes, were healthy, were always achieving and in control. In fact, there are some schools of thought that suggest that trying to be perfect, to always be in control, to exercise our physical beings but not properly nourish our emotional, spiritual, or creative sides may have contributed to us becoming long haulers. We burned the candle at both ends and unwittingly allowed the long tail ‘insult’ to our bodies to take hold (while this insult is very often a virus, it can also be from trauma(s) or from sheer exhaustion).

Is it that simple an explanation? Maybe, maybe not.

But why NOT someone like me? I am not some god-like creature with an impervious shield around me. Life is often cruel and unfair. Just ask those who were on that list, deemed vulnerable to the virus and indeed were. Life was cruel and unfair to them before it was to many of us non-list long haulers.

Just ask the child long haulers out there, who have been robbed of the formative tasks of childhood like learning, playing, failing, and trying again. Ask the teens who dreamed of college or jobs, ask the college kids missing out on dorm life because they had to come home early to get medical care and rest.

I’ve used this Susan Sontag quote before, but it bears repeating:

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

Tomorrow is never guaranteed. Cell biology doesn’t much care what you think is just or unjust.

So NO. Try as we might, we can’t control our health.

But in some ways, yes we can.

Stay with me here.

For the first few years of my long COVID, I experienced a winding journey through the stages of loss. I cried, I wallowed, I felt sorry for myself. I posted about long COVID constantly on social media in the hopes that I could somehow serve as a cautionary tale to those yet to be taken down by it. I texted my sister - a nurse - all the time with new symptoms, new articles or studies that had come out. I walked through a fatigued haze to the dinner table each night, put my face in my hands, and cried from sheer exhaustion while Baldy did his best to empathize with and comfort me.

At the same time, I had fight in me. I hunted down every possible doctor who could help me. I read all the research I could get my hands on and explored many treatments. I doggedly - for YEARS - pursued private disability through my employer and later, government disability (a requirement of the private disability insurer).

I didn’t know it until today (two days before this post is to be published), but apparently while I was filled with dread over my new illness, I also had an internal locus of control.

What is that and why does it matter?

In 1954, the American psychologist Julian B. Rotter developed the concept of locus of control as part of his social learning theory of personality.¹ In short, people with a strong internal locus of control believe events in their life are primarily a result of their own actions: for example, when reviewing their academic performance, people with an internal locus of control tend to praise or blame themselves and their abilities. People with a strong external locus of control tend to praise or blame external factors such as the teacher or the difficulty of the exam.

Since Rotter developed this theory, many studies have been conducted regarding locus of control and things like political ideology, organizational psychology and religion, consumer behavior, and, you guessed it, chronic pain or illness. Many studies (such as this one on chronic illness, and this one and this one on chronic pain) have demonstrated that individuals with a strong internal locus of control tend to have more motivation for treatment and lifestyle changes, and better health outcomes.

While again I didn’t formally know this concept, underneath that self-pitying “why me?” was an understanding that, if I were to have any chance of getting life as I knew it back, I had to find and hold onto even the smallest iota of hope with which to fuel that fight.

But it was an iota, for sure. The grieving process included processing the loss my career, the lost access to my (very physical) pastimes, and the lost freedom to come and go as I pleased. But working through all that helped me eventually land at a place of acceptance that this is what my life was now. All the “why me”-ing wasn’t going to serve me in my days ahead, whether I recovered or not. I had to let my brain settle on the idea that I may always be sick before I could move ahead with getting the most out of life as it had become.

Therapy, particularly with a practitioner who had gone through a similar experience, helped me immeasurably during this time, as I’ve written about before. She had largely recovered, so she was my first ‘bridge’ to seeing and believing that it was possible. It took her almost two years to help me examine my achiever tendencies, to fully grasp the concept of pacing my activity, and to unhinge in my brain the satisfaction of an accomplished to-do list from my entire sense of self.

I started watching recovery videos. I started embracing brain retraining concepts. I started paying close attention to my nervous system and how dysregulated it was. I read books about neuroplasticity (the best one was Norman Doidge’s The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science), I read books about recoveries from all kinds of intractable illnesses, I read books about hope (I wrote about some of these books here).

It took several years, but what I cultivated was a calm sense of “acceptance with a fighting spirit” (I believe Bruce Campbell coined this term, but don’t quote me on that). Accepting what was currently happening, becoming aware of my emotions and my body’s sensations through mindfulness meditation (instead of constantly distracting myself with information/tasks), and doing it all calmly.

Here’s a short video on acceptance of ME/CFS that is relevant to long COVID too:

Learning to dial down the fear was both a nervous system reset ‘hack’ as well as a brain retraining concept. Fear wasn’t serving me. Constantly talking about being sick wasn’t serving me. I needed knowledge and education, combined with inspiration.

I also needed joy, which is a powerful ‘weapon’ in counteracting fear. The fears were intense during my worst days - what was happening to my body? Am I actually dying? Am I going to get some kind of horrible cancer or brain-eating illness as a result of long COVID? Other fears too, like how are we going to survive financially? What if we have to sell our home, the one we love dearly, that we moved into just seven months before the pandemic? How will we ever get out of all this debt?

But a brain and body bathed in joy and inspiration cannot simultaneously be gripped with fear. A relaxed body that is given grace and compassion has a fighting chance to heal itself - maybe not fully, but any one of us would take some improvement over nothing.

So, what I learned over time was in my control were the choices I made about how to view my situation. I could choose despair or I could choose hope.

Despair washed over me for the first few years, and I look back on it with understanding and compassion. It was normal to grieve the way that I did. It was healthy, emotionally. It was necessary. You cannot fake your way to a feeling of hope - that’s called toxic positivity. You have to experience the depths in order to call up the courage to believe in the possibilities.

Over time, I reframed my thoughts. Rather than “this body failed me; it did not do its job to keep me fully healthy,” it became, “this body did its level best to keep me alive when an invader tried to kill me.”

Choosing hope is not ableism, as some who are really entrenched in these illnesses believe. When you choose hope, you’re not deluding yourself. I am aware that there could be biological processes happening in my body (or that already happened) that make full recovery not possible. But actively choosing hope has given me the gift of appreciating small ‘glimmers’ in everyday life - a budding flower, a delicious treat, a beautiful turn of phrase in a novel. It has helped me recognize when I’m having a better day health-wise than other days, which helps me feel like better days are always possible. It has slowed me down in life in all the good ways. It has even helped me appreciate that getting this illness was my body’s way of telling me that my life’s pace needed to change.

I choose to not be mad about that forced change anymore. I choose to see it as a gift.

But also? No, you can’t control some things.

I believe that every point during this illness/recovery journey where I made an intentional choice was one where I took back some of the control.

So yes, you can exert some control over your mindset, as well as maybe things like your nutrition, sleep habits, how often you work to calm your nervous system in a day, whether you go to therapy, whether you surround yourself with toxic people, or create and maintain good boundaries that fiercely protect and prioritize your well-being.

But ultimately, you can’t control the outcome of the choices you make.

Another note here as a timely example:

In long COVID, we are mostly working to quiet things down: our immune system, our inflammation, our nervous system, our overactive minds and bodies. A lot of health influencers want to help “rev up” your metabolism, or supercharge your immune system, as

Build Up Dietitians Newsletter

talks about above.

We can be intentional about nourishing our bodies with more nutrient-dense foods (that we can tolerate; many of us have huge lists of food intolerances post-COVID). We can control the amount of movement we get (common wisdom now says we need some in order to keep joints/muscles/tissues lubricated and in working order, not taxing them to the point of exertion, or at least not right away).

I ate a Mediterranean diet for about 20 years prior to contracting COVID-19, which is by all accounts considered a healthful series of choices. However, contrary to what this recent study suggests, that did nothing to deter my catching it. Did it nourish and support my body in other ways? I’m sure it did. But see my point? I could control what I chose to consume, but I could not control the outcome.

So, just to recap:

• No, you can’t always control if or when bad things happen to you.

• But yes, you can control how you approach the situation.

• And in the end, no, you can’t control the results that come from those approaches.

Bringing this in for a landing

I have chosen hope, joy, inspiration. I have chosen to eat healthfully roughly 90% of the time (the other 10% is for pure joy). I have chosen to prioritize sleep and twice daily meditation most days. When one of my cats wants lap time, especially Zira the Elder, I choose to stop what I’m doing and stay present for them and truthfully, for me. I choose to take a hard look at what happened in my childhood that carried into adulthood and contributed to my having trouble slowing down, resting, listening to my body.

(A timely example: here’s The Disabled Ginger with a note today on choosing gratitude during a difficult POTS flare. Click on it to see the full note.)

I know not everyone with these illnesses has landed here - maybe not yet, and maybe not ever. As I’ve said, I had to go through the despair to get to the hope. But if you feel unable to choose hope, if you feel that there’s no ways in which your life has become anything to appreciate or be joyful about, I respect that. I have felt that way too at times.

I also have days that are worse than others, where hope is a little harder to access. I also still have limits to what I can do or handle. I am about 55-65% recovered, I’d estimate (I caught myself almost including the modifier ‘only’ before the percentages). But I particularly appreciated this line by Bruni:

I do believe we have a say in whether those limits crush and immobilize us. We can divine, in our losses, not just a robbery but a repositioning.

We have been robbed of many things with these illnesses, but we can choose to reposition.

To read about some of the tools I have used to help me choose and maintain hope, reset my nervous system, pace my activity, and teach my brain new messages, check out my Recovery Tools series. I will be adding new posts as I continue through my journey.

Until then, I’ll leave you with another moving Bruni quote from the last page of Dusk:

“I was powered by my profound appreciation of the riot of experiences, more of them thrilling than gutting, that had delivered me to this place in this frame of mind. I was buoyant with the determination to keep clinging to the highs and sloughing off the lows. I swayed and soared on my belief in the beauty of every stage of the precious day, from the near side of dawn to the far side of dusk. On those gusts of feeling, I didn’t need to see the stars because I hovered among them.”

🥳 The After-party 🥳

Announcements, links to articles and studies, recommendations and shout-outs, and miscellany joy and/or tomfoolery.

🎽 A lil Olympics + COVID follow-up from The Sick Times: Grappling with Long COVID as an elite athlete. I feel like we’re waiting anxiously to see if any of the 50 or so athletes known to have had COVID at the Olympics goes on to become a long hauler. Ugh.

🦠 Out of control COVID means permanent segregation for many disabled people.

🗣️ Here’s a fantastic resource for anyone trying to navigate the COVID world safely: "You Have to Live Your Life:" Responses to Common COVID Minimizing Phrases. (By the way, this link comes courtesy of a new Substack that outlines some excellent virtual events, classes, gatherings called

so very virtual

. Check it out).

🌻 Speaking of hope, here’s a short and sweet one:

Holding onto hope

🧪 Common Lab Tests Not Useful in Diagnosing Long COVID, Study Shows. Say this one with me and Jim C.:

🙏🏽 And Y’ALL. God has COVID. You’d think he wouldn’t catch these kinds of things? LOCUS OF CONTROL, god. Locus of control.

⚖️ From

elizabeth grey

, a perspective that helped change mine: Why Matthew Perry drug charges won't solve anyone's ketamine problem.

👩🏾 American women are aligned on abortion laws, regardless of party, survey shows.

👴🏼 Scientists find humans age dramatically in two bursts – at 44, then 60. Forty-four was when I got the ick, which I know for sure has aged me more rapidly.

👏🏽 Hear, hear: Slow productivity worked for Marie Curie — here’s why you should adopt it, too.

🌍 Long COVID: An Emerging Global Health Crisis, August 27th at 11am EST. A panel discussion featuring big names in the LC research world: Nancy Klimas and Ziyad Al-Aly. Register here.

🖥️ Event: On September 10th from 12-1pm PST, Peter Rowe, MD, (Director of the Chronic Fatigue Clinic at Johns Hopkins Children's Center and member of Solve M.E.’s Research Advisory Council) discusses his new book, "Living Well with Orthostatic Intolerance: A Guide to Diagnosis and Treatment." Register here.

🚸 Also on September 10th, at 12pm EST: the next RECOVER webinar, Characterization of Long COVID Among Children and Adolescents, Cohort Insights. Register here.

🤦🏽‍♂️ Buffoon of the week: This person calling themselves London, a MEDICAL PROFESSIONAL, who commented their disbelief at how easily COVID spreads. Really?? Four and a half years into a global pandemic, and THIS is when you learned this? What a buffoon.

Note: only medical professionals are allowed to post comments to articles on MedPage Today.

🏆 Winner of the week: No winner this week. Or, maybe it’s Michelle Obama (what a speech!). But I’m struggling to be excited about the Democrats’ pep rally, what with all the pandemic and genocide denialism going on.

🐈‍⬛ 💩 And finally, it’s this week’s Cat Dump. First, a fascinating Substack post by

Heather Hogan

. I learned so much and now I feel ancestrally connected to the alewives and witches!

The Witch to Childless Cat Lady Pipeline

Second, another fun childless cat post, but for the guys this time! This time by

Louise Haynes

.

Childless Cat Guys

And lastly, shorthairs on the top floor, Zira below deck:

Did you enjoy this post? 🤗

**Disclaimer: Although I AM licensed to drive and to practice social work, I am NOT a licensed medical professional. You should not rely on any information contained in this newsletter in making medical, health-related or other decisions. Please consult a doctor or other health professional.

1. from Wikipedia page on ‘locus of control’