Confession #18: I've Gone Viral

A behind-the-scenes report

One of my Notes on Substack went viral this past week. This post is not about that, but what a trip. 

They denied me disability again last month.

I knew they would.

No one under age fifty gets disability on the first try, nor in the reconsideration stage and it’ll take a judge to determine the truthfulness of my claims moving forward. As a Type-A, first-generation daughter of the women's lib movement, I have been low-key ashamed of my non-working status.

While my publications may indicate that I am upright and 'able to work,’ I am patchworking on a good day. I often write from my bed. On a bad day, I am incapacitated and that one bad day turns to four bad days in a row.

While scores of afflicted writers are able to eloquently share their health situations with brilliant clarity on Substack, I shuttered my former blog about wellness because I was sick of it. Literally. The more I wrote about my mysterious illness, the farther from answers I felt. My health journey is no longer something I want to spend my limited cognitive reserves on and also, talking about it now mostly feels like whining. I have a chronic illness— blah blah.

However, this post is a behind-the-scenes story for Black Sheep Mom readers. I am not whining, I am reporting. Now that the smoke is beginning to clear from a few years in hell, I find myself reflecting on who I was before the fire— and I am sifting through what’s left.

I am also still grieving that it happened at all.

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What is wrong with you?

It began with a cardiac referral in early 2022— palpitations, exercise intolerance, and PEM (post exertional malaise). I just thought I had mono.

Nothing of significance was noted in the stress tests nor EKGs. I was returned to the lobby without an explanation for my sudden, crushing fatigue and violent heart flutters. Blood tests ruled out a host of medical suspicions (including mono) but in 2023, after a random fall and severe bouts of dizziness, I was diagnosed with vertigo.

When I complained of drastic vision changes as well, doctors noted my age and had a chuckle about it being ‘normal.’ An eye exam came back 20/20 with no structural anomalies though.

When I watched my heart rate climb to 155 on my smartwatch after getting out of bed one morning, the cardiologist remained relatively unmoved. He said, “It’s called Postural Orthostatic Tachycardia Syndrome or POTS for short— take these beta blockers and I’ll see you in 6 months.” An ENT sent me for a vestibular assessment and then PT for dizziness. PPPD and MCAS were added to my growing list of ‘conditions.’

Alphabet soup— that's what I'd become.

I had continued to go to work with odd palpitations and ringing ears and bloodshot eyes. I was laying on my office floor between clients and sleeping through every weekend to gain enough strength to push through another week. Well-meaning friends made comparisons and joked about their own peri-menopausal journeys but this was not that, and I kept insisting something else was wrong. When four separate hormone tests, over various time frames, came back in ‘normal’ ranges my doctor said, “On paper you look more like a 30-year-old than a 45-year-old. Keep up the good work!” He even compared my results to his own wife’s numbers and needless to say, he did nothing for my symptoms and I no longer work with that doctor.

Months went by.

The cold sores in my nose became intractable. I was no longer able to walk up a flight of stairs without stopping to catch my breath. I could not exercise without feeling like it had given me the flu. When I got pink eye and an upper respiratory infection over Christmas Break 2023, I was in bed for two weeks and missed the holidays. The first week in January, I got back up and dragged myself to a conference for work. After the closing remarks, two colleagues at my table insisted that they help me get home— they didn’t think I could even navigate a set of stairs. They were right.

For the next four months, I could not stand nor walk, let alone drive. I could not finish my sentences. I could not shower. I could not eat. I lost over 20 pounds in less than 3 months. I laid in my bed, imagining what people would say about my life at my funeral— more accurately, I cried about what they wouldn’t say.

This devolved into waves of bizarre perceptions and strange physical sensations. My proprioception was broken and I was Alice in Wonderland— nothing seemed the right size nor distance away anymore. I felt like I was walking on a boat. I had internal tremors. With closed eyes, sparks danced on my eyelids and I floated in space. When I described these concerns to my doctor, I was dismissed with a Panic Disorder diagnosis and she sent me home with an SSRI.

Unable to hold a job, I was forced to offered my resignation and left a caseload of public school children without their therapist.

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What do the ‘experts’ say?

As a professional who knows how to provide proper mental health assessment, I adamantly disagreed that I was suffering with a classic anxiety or panic disorder. I articulated my concerns to my doctor (with clinical reasoning), but she would not reconsider. My husband also lovingly suggested that I was just depressed and needed to ‘speak with someone’ and boy, the nerve he had to say that to my face more than once.

But— as the months (now years) went by without a solid ‘medical’ explanation for my condition, I was willing to consider that I had suffered a nervous breakdown. Maybe I was finally losing it after decades of survival mode because referral after medical referral offered no real help. I had never felt so alone.

Listen, it’s not like I don’t know what this looks like.

With a degree in health psychology from The University of Michigan, I spent my time in grad school investigating how emotions and cognition manifest as physical illness. I wrote extensively on autoimmune disorders. It was my job to teach psychological interventions and physical wellness from the lens of integrative mental health. I am certified in breath techniques, polyvagal theory, sensory interventions, and integrative supplementation.

My entire professional life has been built upon a clinical understanding of the mind-body connection, but I was also an early personal adopter of biofeedback and cold showers and earthing before every damn podcast extolled their virtues. A veteran yogi and avid runner, I could have counted on one hand the number of times I needed to see a doctor for non-routine medical care in 30 adult years before this mess— I've been organic, chemical-free, fragrance-free, dye-free, and anti-GMO for decades. I even forced my family to eat in-season from our garden for one full calendar year ala Barbara Kingsolver’s Animal Vegetable Miracle.

So, yeah, I know how to be [capital H] healthy. I know self-care. I can even run the workshops and teach the interventions and techniques— but sometimes we endure an event (or series of them) so devastating that decades of wellness efforts seem largely a waste of our former abundances of time and energy. I can admit that now, from my bed.

Enter a random virus or bacteria or a damaged cell cluster during a period of acute stress vulnerability and we’re dead meat.

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So, what is it really?

“Cause unknown” bears the subtitle: This is psychogenic. Cultural expectations and historical trust in doctors make it an offense to call medical providers ignorant. Ah— but to call a woman idiopathically depressed or anxious is oddly and infuriatingly not only acceptable, it is medically indicated.

The panic disorder label is still in my EMR. I have asked to have it removed and that request has been refused (twice). So, while I can professionally tell you that I do not meet clinical criteria for panic disorder— I was still required to submit to an official psychological evaluation this summer for the government to consider the veracity of my illness. It was the same test that I have administered in practice for years and I had to laugh at the irony. And the stupidity.

Here’s the actual truth from a professional: we cannot parse cognitive declines and emotional states from the physical challenges of a body working overtime to clear a cellular infection and fix systemic damage. They are the same. A nervous breakdown is, by definition, a physical malady.

• Latin: nervus— meaning “sinew,” “tendon,” or “nerve”

So, "nervous system" literally refers to the physical network of nerves running through the body like sinews or strings. The vagus nerve is the 10th cranial nerve of 12. It connects to all major, unconscious processes in our bodies: breathing, heart rate, digestion, visual perception, vocal tone, smell, taste, and hundreds of other automatic functions that keep us upright and alive all day.

Importantly, the vagus acts bi-directionally from the brain to the gut and the gut to the brain. Among the hundreds of signals that it manages, it is what allows our bodies to react to increases in needs for energy (oxygen) and to fight, flee, or freeze when we need to protect ourselves from perceived danger.

See where I'm going here?

When a human sits too long in a corrosive bath of cortisol and adrenaline, inflammation spreads and cell destruction speeds up. This not only increases one's vulnerability to a viral attack, it makes it exponentially harder for the overburdened cells to clear the accumulating pollution. I had been sitting in toxic stress sludge for a long, long time (like since birth). When Covid hit, I was 43 with a toddler, I was a therapist in a raging pandemic, and now had a son in prison. I also suffered several miscarriages and weathered some difficult personal betrayals during this timeframe. The ‘smoke’ was billowing.

Physiological sources of panic/anxiety are poorly understood, even by members of my own profession. I have learned the hard way that the vast majority of doctors, nurses, and therapists don’t have a clue about the impact of HPA disruption, autoimmunity, nor post-viral infection let alone understand the intricate innervations of the vagus nerve upon the rest of the body.

This is a relatively new science— brand new when I was in grad school. It is still not taught outside of progressive graduate school level psychology courses or fringe psychological conferences. And yet (AND YET) insurance and pharma companies are making billions allowing doctors and NPs to be the diagnostic harbingers of mood disorders, ADHD, and other psychiatric diagnoses for prescription refills.

Also, that is not science.

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So, you're getting better, right?

Like so many chronically ill peers, I am still largely without answers and being issued medications off-label in the event that they might help ‘a little.’ I am a tiny, white mouse trapped in a maze except there is no treat nor cocaine in here. *True story: I did have an infectious disease doctor recommend nicotine for Long Covid treatment so I tried the patches but by day two of the experiment, I was crawling out of my skin so it was back to the lab again.

I now utilize the rainbow-colored, econo-sized pill-organizer walking index of supplements that I am— quercetin, lysine, DAO, SR-coQ10, folinic acid, adeno B, D, K, zinc, NAC, glutathione, colostrum, even methylene blue. For my crunchy friends who will inevitably ask— yes, I tried all of the hydroxychloroquines and Ivermectins and all of the sublinguals and Chinese herbal potions. I drink water from a copper water bottle and I fast 16/8 every day.

Gone are the days of casual caffeine use, so if nothing else, please appreciate that I write every word you read here without the aid of coffee or stimulants and even though I am secretly convinced that I would be a much better writer if I drank, I haven't had a drop of alcohol since 2022. No histamines, low oxalates, no inflammatory anything— my life has been reduced and reduced and reduced.

And what do I still get from loving relatives and friends and online commentary and now from SSI disability? “At least it isn’t cancer. At least you are ‘young.’ At least you're not in menopause. At least you have a husband to support you. At least you have insurance.”

Yeah, at least.

The neuromuscular specialist has told me that the damage is now considered ‘permanent.’ I will likely never return to pre-virus function and we can call that a nervous breakdown, if you want.

Without question, the Covid virus attacked, weakened, and damaged the on-off switch of my vagus nerve through several mechanisms. It also fried the small fiber nerve bundles connecting my eyes, ears, heart, and stomach to my brain. This biological reality created chaos in normally unconscious, smoothly operating bodily functions— and that also looks a lot like several DSM classifications too. Call it whatever you want, I am disabled.

I can, however, cobble together a good week with careful pacing, lots of sleep, timed meds, handfuls of supplements, and mindful movement. I have learned how to avoid triggers like loud and busy places, driving too far, standing for too long, or getting up too fast. Anything that raises my heart rate or taxes my visual system, certain foods, and heat or cold exposure must be avoided. I am fragile, and every part of daily life just takes me more time than I would prefer. I'm like your great-grandma only I'm still in my 40s.

In the grand scheme of things, I think we could also call this Prison Syndrome By Proxy. Covid was an arson, sure, and if the piles of personal stressors, responsibilities, and emotional burdens acted as dry kindling, my son's incarceration was a powder keg.

As hard as it is on them, doing time is also a brutal beating for the families of our incarcerated. In the midst and wake of Covid, it has been torture. While other people ‘sheltered in place’ and found fun new hobbies and made jokes online, I worked overtime because waitlists and isolation and global panic. My oldest son spent that season bouncing from rehab to jail to rehab until a judge ordered him to State prison— while his mental health and addiction struggles went largely unnoticed and unaddressed in mandated lockdowns.

Swamped at work, I would miss his collect calls which always hit like abandoning him. Any hope of restful sleep was gone. Day after day, I drove to a workplace to help everyone else’s kid get through a pandemic while mine sat alone in an isolation cell. I couldn’t tell anyone because the whole world was on fire and anyway, who wants to see a therapist whose kid is in prison? I compartmentalized my life so tightly that I couldn't breathe.

Looking back, I needed to grieve. I needed to rest. I needed to not be the expert and I needed to be allowed to fall apart— eventually Covid ensured I did just that.

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My disability means that I write when and how I can. Substack (thank you) gives me the platform to do so. While I would have fancied myself a writer focused on how humans stay healthy and how addicts turn their lives around without prison, that is not our story. I am still in the trench, and so is my son. We know a hell of a lot more about system failures than glittering personal success right now, but that's okay. We are in good company—

As usual, I had to take some down time this week due to illness and I fell asleep a few times watching the new Billy Joel: And So It Goes documentary. As fate would have it, I woke up all sweaty and disoriented to him singing Vienna, a song about finding purpose and meaning without forcing it. All I could do was smirk at the knowing.

Slow down, you crazy child
Take the phone off the hook and disappear for a while—
It's alright, you can afford to lose a day or two—
When will you realize, Vienna waits for you?