Welcome To Whatever Comes Next

Its October 12, 2019, and I’m running up the Queen K in the closing miles of the Ironman World Championships in Hawaii. I haven’t had a good race – training didn’t go well, I wasn’t in great shape, I didn’t execute well - but I’m still grinding as hard as I can as the finish approaches. I continue pushing until the final few hundred meters, where the sun is setting over the water as I run along the Pacific Ocean. Now, I allow myself to relax enough to take it in as it happens. It’s out of character for me, to not be pressing all the way to the finish line. But any chance of a good performance is long since gone, and I want to experience this for a just a little while longer. I tell myself to appreciate the situation I find myself in, to soak it all in while I can, because I may never have the chance to experience something like this again. That notion is potentially more prescient that I can possibly know at the time.

Its early March 2020, and my girlfriend Katie and I are in Seattle. It’s the last of a month straight of weekend getaways that we’ll soon come to feel we’ve timed perfectly. CNN is playing in the airport as I await my flight. The reporter is detailing the recent outbreak, beginning in a Seattle nursing home, of a disease that has only just entered the periphery of my consciousness.

I’m too tired to complete the workout(s) I had planned for the day. That evening at work, the typical efforts of air traffic control seem more taxing than they should, than they usually do. My body feels just ever so slightly agitated and I can’t explain why. Before I leave for home, Tom Hanks will announce that he has Covid-19 and the NBA will have suspended its season. Its midnight on March 11, 2020 when I stop at the grocery store for the last thermometer on the shelf and find that, thankfully, my temperature is still normal.

My temperature is a couple degrees less normal, I’m exhausted, and my head is starting to hurt. Its March 12, 2020, and I’ve decided to stay home from work today. I actually feel kind of guilty about it because, really, I’m not that sick. But soon I’ll be a little short of breath, soon my lungs will hurt when I exhale, and soon I’ll feel winded brushing my teeth. Tests aren’t available yet to confirm it, but I’m one of the first people in the state of Virginia sick with Covid-19.

It’s the spring of 2020, and it seems nothing will ever be the same again. Certainly not work – the near complete absence of planes from the sky renders my work somewhat less urgent than it once was. In fact I’m barely working at all, as the world gingerly attempts to exist in a half-frozen state. I am exercising normally though, and while I’m certainly not training for anything in the truest sense, I spend the summer heading out for century rides, grabbing Strava KOMs, racing on Zwift, and generally enjoying whatever exercise I feel like doing any given day.

But that pesky covid, while never acutely concerning, has never really left me. I have new problems sleeping, suffer from repeated bouts of extreme thirst, smell smoke at random times, have tender red joints, and can’t hardly sit or lie down without one limb or another going numb. It’s the fall of 2020 before I finally decide to take some time off from exercise so I can try to heal in a more complete sense.

Eventually I’m past the strange lingering symptoms and back at it building towards some pretty decent bike fitness. It’s the spring of 2021 and I’m focused on biking near the front of the amateur field at Eagleman 70.3 in June, the first of last year’s rescheduled races. I’ve decided to make the bike, a longtime weakness of mine, the major focal point in my return to training and racing. So while the swim, run, and overall performance will be somewhat lacking, I’m excited about how fast I’m hoping to ride in a couple of months.

I’ve got the overnight shift at work. There’s only one plane on the scope and I’m fortunate I barely have to speak, because it seriously hurts to breathe. It’s the beginning of April 2021, and the side effects of the Pfizer vaccine are worse than I expected. Much worse than my acute bout of covid, in fact. Every breath will hurt for three days, and my lungs will continue to ache for a few more. But then it’ll pass, and I’m back on my bike every day just like before. Strangely, though, my tri bike no longer seems to fit right. Every day I find myself fiddling with saddle height, bar width, anything to make my neck stop hurting so much when I ride. My efforts are fruitless.

It’s the beginning of May 2021, days after my second dose of the covid vaccine, and I’m waking up from a nap in the worst pain of my life. My head feels like its splitting open. I’m nauseated and want to puke from the pain. When I try to stand up, the world is spinning around me. I’m struggling to balance as my heart tries to beat out of my chest. Two days later I think its going to succeed, as I suffer from an entire day’s worth of irregular palpitations while the burning, nauseating, electric pain in my head and neck rages on.

It's June 2021 and my symptoms are yet to abate. I wake every morning in pain that seems too intense to be real. 3…4…5 attempts to stand up out of bed, but I’m too dizzy to orient and too weak to force myself up. Eventually I make it to the stairs, where I’ll sit back down and delicately lower myself, one step a time, down them like a small child. I’ll pound water and sip coffee as the dizziness begins fading, my balance returns, and the pain in my head becomes ever so slightly muted. I will still spend the day in some kind of hell, in pain, with electricity coursing through my head and neck, with my heart beating out of control, with the nausea grinding me to a periodic stop. Later, left decimated by another day of sickness, I’ll return up the stairs in much the same fashion, on all fours to ensure I don’t lose my balance and tumble back down

A neurological exam, brain MRI, and bloodwork find nothing wrong with me. A nurse practitioner suggests I may have anxiety.

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If you’ve never been there, you’re just going to have to take my word for it – The end of an Ironman really hurts. The end of any race really, but there’s something special about racing for so many hours. It hurts from so much further out than any other race, and requires you to deal for so much longer with an intensity of discomfort that might seem almost fleeting in a shorter event. It wasn’t always this way, but I actually consider myself to be pretty good at it. I know what it’s like to run myself past the point of real consciousness and I’ve been in more than a couple medical tents in my life. The ability to absorb and deal with that pain is something I worked very hard to be good at, and is by now almost a point of pride.

So much of what makes that pain manageable is that you’re in complete control of the situation. When it comes down to it, you’re doing this to yourself. You can keep going in part because there’s a light at the end of the tunnel, but for me the knowledge that I can end the pain whenever I want or need is so much of what allows me to accept it. Complete control over the pain, a desire to be the one calling all the shots, is how my mind frames the end of an Ironman. Everything is easier when you’re in control.

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It’s the summer of 2021 and while I can’t tell if I’m suicidal, I’m certain I don’t want to be alive. Nor does it feel fair that I have to be. There’s no value, no joy, no pleasure in my life as I suffer through this. Right now, there is no light at the end of the tunnel, and I don’t feel I have any control. And so I spend a lot of time thinking about death, almost hyper-focused on it. I don’t intend to take matters into my own hands, but I need to constantly remind myself that the option is there. The option is what makes the suffering a choice, and for me the knowledge that I can end the pain whenever I want or need is so much of what allows me to accept it. Complete control over the pain, a desire to be the one calling all the shots, is how my mind frames hopeless suffering. Everything is easier when you’re in control.

It’s the fall of 2021 and I’ve been experimenting with diet as a means of controlling my symptoms. I try a few things but two strategies seem to make a noticeable difference – dramatically reducing carbohydrate intake, and fasting. It starts with a one meal per day approach – meat, fish, olive oil, veggies, berries. I mix in longer fasts of 30-40 hours and find my pain temporarily receding each time I do. I’m still suffering, the neurological symptoms persist, but they reach a level I can push myself through. I even have “good stretches” (the first one occurring at the end of July), during which I only feel like hell the first 15 minutes of the day. After that, the nausea is gone and the headache is but an annoyance.

Its September 2021 and I finally have adverse autoimmune results, but they lack for any meaning or direction. The rheumatologist dismisses them as “something to keep an eye on in the future” and refuses to write the word “vaccine” on my chart.

I obviously don’t have anything to compare it to, but the entire wedding experience feels just a little bit strange. Its September 24 and I’m fortunate enough to have entered my third legitimate “good stretch” just in time to marry Katie. Still, I only forget, completely and totally, about my health for the ceremony itself. The rest of the evening, the entire weekend really, it lingers in the corners of my mind. Virtually nobody knows how afraid I am of coming apart today, how it feels like I’m watching myself from a distance for any sign of escalating intensity. I wonder if anybody notices that I hide away for minutes to collect myself, or that during each toast I dutifully raise my glass of champagne before placing it back perpetually unsipped. Fortunately, a headache is as bad as it gets. I even make it through the entire honeymoon with only few minor breakdowns.

Its any random day between November and May. My diet is more extreme than it once was – beef, fish, berries, carrots, and very little else. I fast frequently, or as frequently as I can muster the strength to make myself do it. I cycle through stretches of good and bad. Sometimes these cycles are predictable, as with the good stretches that follow from regular, consistent fasting. Sometimes they seem random, as happens every time a good stretch comes to an end. These are the most frustrating, the most depressing, the most difficult to deal with. Despite my pride and despite my best efforts, I often spiral. I want so badly to be strong enough to fight the bad stretch, to believe I’m tougher than it is. I know I always, always, always pull out of it if I can just go the next 48 hours without eating. But I am not strong. I am weak. The warm electricity pulsing through my spine, my head, and my brain, making my legs weak and my stomach queasy, will win again, and I will find hollow comfort in a block of cheese as I swear to try harder tomorrow.

Its some random Sunday in spring 2022 and I’ve been feeling pretty good the last couple weeks. I don’t feel normal, mind you. The aching in my neck and the back of my head has not retreated for even a single day. There’s just a little nausea here and there, especially in the morning, and sometimes the headache gets worse. But, all things considered, I feel pretty good. I feel functional. And so I experiment – for the first time in a year I eat both a sweet potato and an avocado, staples of my past life. The next morning, for the first time in months, I’m too dizzy to get out of bed. I sit at the top of the steps, in a haze, angry at myself for being so fucking stupid. It’ll be a week before I summon the strength to skip a day of eating and begin repairing my mistake.

It’s a Monday in June 2022 and I’m riding high on the back of a stretch I might almost call “great.” I’ve been doing well with my diet, and am even back to light exercise – walking mostly, but some yoga or a very easy bike ride here or there. Once again I find myself experimenting, but this time at work. Fear not – I haven’t worked an airplane in a year, instead filling my time with whatever administrative tasks people can find for me to do. That’ll change today though, at least in some sense, as we fire up a problem in the simulation lab and I begin instructing the ghost pilots to descend and maintain. 35 minutes later we’re done and I’ve had a blast finally controlling “airplanes” again, with only minor nausea and a dull throbbing in my brain as a result. I think, in the moment, that this has been a success. But I am mistaken, because the suffering doesn’t come right away. No, it builds over the following minutes and hours, just as it did a year before while doing the real thing. It grows steadily and consistently until some two hours later my head is exploding and I need to lie down. When I finally stand back up, I’m unable. Once again the world is spinning, my head is ripping apart, my guts want to escape from within, and I can’t find the balance to put one foot in front of the other. My neck, the spinal column, for the hundredth time feels an agonizing mix of burning nausea and the sensation of complete numbness you get when you fall asleep on your arm the wrong way. It’ll be days before the acute consequences subside. All week I’ll struggle to keep myself together, the shooting electric pains often leaving me in a zombie-state, struggling for word or action.

Its only a few days later, and the fourth neurologist I’ve seen becomes confrontational when I suggest that diet is the primary factor in how I will feel on any given day. She counters by suggesting that perhaps I’m struggling with depression.

My new rheumatologist, on the other hand, is a little blunt and doesn’t seem very chatty, but there’s something else too. It seems like she’s actually listening to the words I say, the first of about ten specialists for which this is really true. Its June 23, 2022 and I feel a great sense of relief that, regardless of whether she produces any answers, this particular physician gives some measure of credence to my thoughts and concerns. She pokes and prods me, orders a full dozen vials worth of bloodwork, and refers me to an immunologist, a cardiologist, and a geneticist for further evaluation.

Anti-U1 RNP antibodies are those directed against a specific ribonucleoprotein particle (U1), and are strongly associated with the development and progression of autoimmune connective tissue disease. They’re specifically used in the clinical diagnoses of two autoimmune diseases, lupus and (primarily) something called “mixed connective tissue disease.” It’s the first week of July and my test results are finally back, glaringly positive for Anti-U1 RNP. They’re also positive for two other markers, Anti-Sm and Anti-Ro, but NOT the general autoimmune marker, ANA. It’s a bit of a strange presentation, but is the clearest indication of something concrete (-ish) thus far. I had long suspected, and I think correctly deduced, that at least a part of my illness was rooted in an autoimmune disorder. I was unsure, however, if that was the primary issue, if that issue still persisted, or if any or all of my symptoms were instead a manifestation of residual connective tissue/neurological/etc. damage suffered more acutely after the vaccine.

While temporarily deflating (yes, this was a cheese day), the significant, persistent autoimmune abnormalities actually provide a great deal of clarity. They provide direction, purpose, motivation that I had been lacking on so many of the days I had failed to hold myself together. Most doctors will likely tell you the opposite, but I think many or most autoimmune diseases can be cured, or at least driven very deeply into remission. Armed with this knowledge, the path forward is overwhelmingly clear – I simply had to do everything necessary to cure myself. What that means, first and foremost, is a fast. It’s early afternoon on July 30, 2022, and I’m 171 hours removed from the consumption of any calories. The previous Sunday morning I finished my ribs and roast, and then I waited. And waited. And waited some more. And while I waited, some remarkable things happened. First the headaches and nausea, then the hot flashes and racing heart, then the chest pain all slowly faded away. There is no dizziness, no problems with balance, no electricity shooting through my brain. By the end of the week even the neck and spinal pain, by far my most persistent symptom, have shriveled to a shadow of its former self. My sleep improves, my mind clears, my resting heart rate drops… my health reaches its highest point in some 16 months.

“30:33”, my watch tells me. That’s how long I’ve been running this morning. No, it wasn’t 4 miles. It wasn’t even 3 miles, but 2.3 miles of jogging, shuffling, and waking. I don’t care that it was the slowest run of my life. I don’t care that I walked half of it. I care only that today was the first run of the rest of my life. Its August 6, 2022 and I’m five days past the end of my fast and two weeks removed from my last gram of plant matter. I feel better today than I’ve felt in three years, and its incredibly surreal. Logically, I expected this was always going to work. I didn’t go a week without eating and jettison carrots on a whim, after all. But to feel it develop in real time has been an almost out of body experience. Its nearly impossible to process the “what if.” I suspect I may still be just as fundamentally sick today as I was 15 months prior, when I couldn’t manage stairs in either direction. Autoimmune diseases don’t go away in two weeks, and the recent food and work experiments have proven how fragile my health really is. I still fear I’m just as fundamentally sick as so many of those people on the internet, in the support groups, who deal with these injuries bed-ridden, medicated, trying to survive. So many people who shared the same story as me are still living it, and yet I just went for a run. I offer advice when appropriate, and its better received here than it would be most places, but its still routinely drowned out by echoes of “whole-food plant based.” My dinner tonight will be three pounds of beef and tomorrow, on the same loop, my watch will read 28:20. 

“No, no, no, no, no” says the rheumatologist I previously mistook for a good listener. It’s August 15, 2022, and she is adamantly arguing that diet cannot possibly influence autoimmune disease. She is aghast that I would fast, and seems bewildered that I could ever think it a beneficial exercise. The science doesn’t support her on either point but, well…I’m no longer under the impression that she’s listening to what I have to say. I feel I can’t get a word in at all, as I’m talked down and talked over. The abnormal autoimmune presentation, the negative ANA, precludes a diagnosis of neuropsychiatric lupus (Read also here: Is it Neuropsychiatric Lupus?). What’s worse is that I tell her I had my primary care guy (shout out to Sam, the only medical professional that actually does listen to what I say) reorder a couple of the autoimmune markers that had just been positive. On the back of my 7+ day fast, the results are now negative. This is not an unexpected result, and to me is further evidence that diet can indeed massively modify autoimmune symptoms and presentation. It’s an attempt to match an anecdote to the literature, but I’ll never get the chance to explain that rationale. “No, no, no, no!” We’re at an impasse.

While things continue to improve, it continues to be clear that things are still so far from normal. Its late August, and we’re in Colorado for a wedding. I’m a couple days removed from “refresher training” at work, which for me amounts to a forced lab simulation at the very worst time. I’m also, unknown to me, a day away from the beginnings of a cold. My neurological symptoms, for the first time in a little while, are legitimately debilitating. I’m struggling to drive, or go for a walk, or put together coherent thoughts and sentences. I’m waking up feeling like shit, which isn’t really a feeling I’ve missed. It’s an unrelenting electrical vibration sensation deep in my brain. Every few seconds it pulses painfully, seemingly short-circuiting whatever thought or action I was in the middle of. Then the neurological manifestations fade as the cold sets in, and soon I’m feeling pretty healthy just in time for the end of the trip.

I’m living two lives in parallel, as things evolve on an almost daily basis. The previous neurological episode, the trip to Colorado, and a couple more cracks at multi-day fasts have paused the running experiment. I’m eating a bit of fruit now also, because things have gone well enough that I’m exercising in some capacity almost every day. Fruit is the “safest” carb source, causes no obvious symptoms, and seems to help with electrolyte balance as exercise increases. I’m swimming, doing some strength, and hiking the trails around the reservoir near our house. Several times now I’ve put in a good effort for a couple hours even, and I’m feeling guilty about it. I’ve now been told I’ll be permanently disqualified as a controller, based on nothing but my word that I’m too sick to work, and yet I feel pretty good aggressively hiking 8 miles of single-track. It’s honestly eating at me, like I shouldn’t be “allowed” to feel good doing things I enjoy while simultaneously claiming I can’t do my job. Work life and “real” life are diverging in uncomfortable fashion.

It's October 16, 2022 and that cognitive dissonance is disintegrating around me. I’m back in the simulation lab again, this time working as a “ghost pilot” for other controllers. I feel great this morning, apart from my ongoing neck problems, but by mid-day I’ll be as sick as I’ve been since summer. It doesn’t all come crashing back, but enough of it certainly does – I’m nauseated, dizzy, and feel like my entire body is attached to an electrical wire. For the next day or two, my entire body will hurt and go numb, I’ll struggle with daily tasks, and I’ll be too “electrified” to get good sleep. This is certainly the most jarring, but thankfully not the worst, episode I’ve experienced. I have no idea how to make sense of the improved daily function and health in the context of another acute neurological failure. The juxtaposition raises many questions about my health and my future. While I’m confident in my approach, and have the receipts to back it up, I’m forced to reconcile this consistent improvement with the possibility that it may be a very long time before I’m truly healthy, or that I may always suffer significant neurological complications.

By mid-week I’ll have fasted for 48 hours, and the next day back to exercising. I’m jogging again now, more quickly than before, although “quickly” is very much a relative term. I remain diligent and cautious, keeping each run/jog/shuffle at the same easy recovery heart rate I used years ago when training much more seriously. I used to run near 8 minutes per mile at that effort but today, November 16, 2022, I finally finish my 6 mile jog in under an hour. 9:57 pace. This is a major milestone, albeit an arbitrary and artificial one, and one that’s been bouncing around my mind the last couple of weeks. There is nothing inherently special about an easy run at 10 minute pace, but with thousands of words already written on this page, it has become my personal threshold for opening up and sharing my experience.

I am not healthy. In fact, I may be quite unwell. But I’ve jogged 31 miles in the seven days, each day ever so slightly quicker than the one before it. Each day ever more confident that some day I will accomplish something worth writing about. Confident enough that, at the arbitrary feat of 9:57 pace, I’m ready to start telling my story. 

 

 

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This post is getting really long, but you’re fairly caught up at this point. I don’t know where this leaves me now. I’ve progressed to the point that I feel comfortable sharing this publicly, but that doesn’t mean I’m all that normal or healthy yet. The most severe problems, be they autoimmune or otherwise, seem largely in the past. That’s great, obviously. That’s what allows me to exercise again and even just function on a day-to-day basis. 

I still have some lasting issues or residual damage causing problems on a nearly daily basis. The major day-to-day concern is my neck, which is still painful and sensitive as a result of…. nerve damage? Cranial nerve or spinal cord compression? I don’t know what exactly (Again, more thoughts here: Is it Neuropsychiatric Lupus?). But my neck hurts basically every day and is incredibly prone to “falling asleep” the same way your arm would if you slept on it wrong all night. Sitting or lying in the wrong position or on the wrong surface and I get that same numb/tingling/detached feeling you’re accustomed to, except in my neck and head. I still can’t sit on our couch. Most chairs cause a problem. None of the 10 or so pillows in our house allow me to sleep and wake with reasonable neck function – I use a blanket folded up to just the right shape instead. I have no idea when (or, to be 100% honest, if) I’ll ever seriously be back on a bike again, because that takes my neck of out neutral alignment and triggers these problems also. Every morning and usually once or twice more every day I wear a neck brace for a little while because it seems to the only reliable way of keeping things together once my neck starts going on me. That said - if I’m diligent, I can function well and most exercise is a non-issue. It really takes constant attention and care to continue feeling normal, but it’s certainly doable.

The other lasting concern is my long-term cognitive and mental capacity. It’s been only a month since my last attempt at simulated air traffic control completely destroyed me, and I frankly have no reason to be confident that debility will ever go away. I don’t know when or if I’ll ever be capable of that level of concentration and rapid cognition again. And that extends past the niche world of ATC too. I’m simply missing several percentage points of who I used to be – intellectually, mentally, and emotionally. It doesn’t feel like my brain operates quite like it used to and for all I know that could be permanent, although I obviously hope that isn’t that case.

Where do we go from here? I don’t know for sure. My health is obviously the priority and I’m doing everything I can to improve it. But its not what I’m thinking about at all – I love to train and I love to race, and I’m going to do everything I can to do both of those to the best of my ability moving forward. I wasn’t comfortable posting this until I had truly made it back to something resembling normal easy running, but now that I have, I really do think I’m a good halfway back from where I was 15 months ago to where I hope to be in the future. Fighting my way back to this point is the greatest accomplishment in my life and I don’t think anything else even comes close.

In some sense everything else is a bonus, but I want so much more. I want to win races. I want a fast marathon, a fast Ironman. I want to go back to Kona.

I want to show that this is possible. I want some day for some person who is struggling – whether they have an autoimmune condition, or long covid, or if its because the covid vaccine absolutely ripped their entire life apart – to find this and believe that they don’t have to give up just because a doctor or 12 tells them there’s nothing to be done.

And frankly I want to prove how much can be accomplished with an optimal diet. I’m coming from a very low place – where I couldn’t get up the stairs, where I couldn’t think, where I couldn’t function, and where I absolutely did not want to be alive. I’m trying to make it all the way back, and I only think any of that is possible because I’ve worked relentlessly hard to figure out exactly what allows me to function and allows my health to improve. And I think the bulk of that is diet, so I’m going to talk about that a lot. 

Health and nutrition are absolutely overwhelming passions of mine. Part of the reason for starting this blog is to say a lot of things I think people should hear. I will write thousands and thousands of words supported by hundreds and hundreds of studies detailing what I consider to be the absolutely catastrophic dietary and nutrition paradigms in modern society. And I really hope some people listen.

And if you don’t, that’s fine too. I’ll also be sharing my journey back to wherever I end up, be it success in triathlon or just success in making it back the start line of the local 10k. You’re all invited to follow along.