Watching the frenzy around vaccines has been an emotional experience for me. A lot of people are making assumptions about the private medical decisions of others. I’ve been watching friends “believe science” and discuss bonding over their jabs. And I’ve been watching friends caution that perhaps we should keep an eye on the long term effects of novel therapies and weigh the costs. The most frustrating aspect has been that everyone assumes that I am on their side. That I’m normal enough to have an opinion that is based on political affiliations and not one informed by my status as a medical outlier.
I guarantee you that my feelings on medical procedures are more complex and nuanced than any zeitgeist narrative thanks to being a medical outlier. As I’ve watched worried well and vaccine skeptics look to bond with me (especially those concerned about side effects or long term impacts) I find myself frustrated. It’s not that likely your concerns are mine. The chances that you as a healthy person with maybe a few issues are also a medical outlier in the way I am is unlikely. Liketrust me you’d know it. You’d know if you were actually unusual. It doesn’t fucking sneak up on you.
I’m literally outlier. By definition I’m at the fringes. It’s not a surprise when shit goes wrong as weird medical shit tends to let you know. It’s not a vague concern about something that might happen. I’ve got blood work and specialists. I watch my markers like a hawk to see how much we much we push my immune system quarter by quarter.
I want to discuss my decisions for my own safety and what I’ll be doing but it just doesn’t seem, well ironically, safe. Too many people are too polarized and frankly paranoid. Most of you don’t have to worry about the stuff I worry about. It’s just not that likely you are going to experience the kind of autoimmune system cascades that are a real risk for someone like me. It’s a one in a million kind of thing. So equally it’s possible what is very safe for those millions is a risk for me. I wish it weren’t.
So I would ask folks to please take some care with privacy and respect when discussing medical conditions with anyone. Especially if you know they have something complex or long term. Other people’s assumptions about what I can or cannot do makes me feel alone and sad. Don’t let your politics or your fears invade the space of others who may not be so lucky as to have the same choices and opportunities. I promise we really appreciate the empathy and kindness.
I often find it easier to talk about the darker parts of my journey from chronic disease once I’m already through the worst of it. If you are hearing about my long dark night of the soul it’s probably because I can see dawn breaking.
Maybe it’s because it’s hard to discuss the challenges when you are in the thick of them. Having any amount of perspective when life is at its worst is a skill reserved for religious scholars and internet advice gurus. The rest of us just try for hindsight being 20-20 at best. I admire the stoic philosopher types but I’m generally just happy to be able to survive rough days with a minimum of pain and angst.
It’s likely this tension between a better current reality and the heaviness of past challenges that made me so confused by the reaction when I posted about the envy I felt towards people who live healthy normal lives. A number of people checked in on me worried or concerned about how I was doing. I didn’t get it. I had just been discussing how well I’d been doing so why was everyone offering to pray me me?
I’d come to terms with some of the sadness and anger I’d felt during the worst days of my illness because I was doing well. I’d been posting about how excited I was that I felt great, had clean bloodwork, and was seeing better days. It was because I was doing so well I decided it was best to ruminate on the challenges I’d experienced. I was on the other side of it. Feeling well and energized meant I had the capacity to explore the dark places. When I’m actually in a dark places usually all I can do is survive the experience.
But I get that others didn’t see that now. They saw darkness and sadness and reach out to me with kindness. The love and support from people close to me and the messages and prayers from my internet friends all added up to me feeling like the good times will just keep getting better. If you are reading this I encourage you to share your journey. You just might get back the same love that I got. People are great that way.
I didn’t have hobbies for a long time. People would ask me what I did in my free time and I’d give them a confused look and try to come up with a plausible activity like reading. I was embarrassed. Everyone else constantly doing shit. In reality, I didn’t have the energy for anything but work and taking care of life basics (and for a few years spare energy was dedicated to sex and dating but that’s different post).
I’ve been an on and off entrepreneur my whole working life. And if I’m totally candid I’ve had health issues that impacted my energy since I was a child. So while I have had things in my life other people would consider hobbies, they were slowly stripped from me. I stopped horseback riding somewhere between 16-17 when I dropped out of school. I told people it was allergies (which was true) but much of it was exhaustion. I was fighting just to keep up with obligations to education like taking tests for college and to prove I had learned enough to be considered a “graduate” by my school.
In college I was blessed to go to a school that wasn’t cool to have have parties. That made it easy to hide being too tired to socialize. Other students were in clubs. I didn’t join anything. I was thrilled to make it to my job (as a research assistant to a medical ethicist) and get home to my roommate and boyfriend to watch tv at night. I didn’t realize this wasn’t normal at the time.
Once I started my first company all I did was work. I had to socialize professionally so I spent a lot of time at fashion parties. While this is fun it wasn’t a hobby. I partied because it’s how I made my living. For a while I thought this meant I had a hip social life. Which was a nice lie. I had a glamorous job.
It started dawning on me around 24 or 25 after I sold my first company and had to relocate to San Francisco for the acquisition that other people didn’t live like I did. In San Francisco people hiked, did yoga, took classes, and all the other “bullshit” I looked down on. I looked down on hobbies not because I think work is better but as a defense mechanism. I was jealous.
All these people had energy at the end of the day. They wanted to do things! That was unfathomable to me. I could barely do work. How the fuck was I supposed to do stand up paddle boarding on the bay? I was not kind to people that had hobbies. I told myself (and they could tell) I thought they weren’t as good as me. Of course, now I realize this was the trauma of illness manifesting it. I couldn’t do what they did. Rather than feel sad or angry or some other productive feeling I decided I was better. All to avoid letting myself feel how angry I was that I couldn’t have that life.
I’ve come to accept that I still live more than most people even with limitations like illness. I don’t have to prove a good life with status markers like hobbies. Though I’m still fighting to get to complete functionality and control with my autoimmune disease. But even if I do get to a place where I can live normally I might still skip the hobbies. I’ll go straight for the pleasures like work. I’ve only got so much time so I may as well enjoy each moment with what I actually like.
When you live with a chronic illness a certain element of unpredictability is always there. As I’m settle into having a case that is under control (what I wouldn’t give for a term like remission but autoimmune doesn’t get terms like that) I find my body is more reliable. More days are good days and bad days can be papered over with drugs. And as an autoimmune case stabilizes you can take more risks to push through bad days without promoting a systems cascade. That means you can take more risks on a good day and have a positive outcome.
Today was a good day. It might sound strange but this was the first noticeable day where I worked a straight workday in over 18 months. I started off before 9am and didn’t wrap until 5:30. I barely broke for lunch. It’s not that I haven’t worked during my sabbatical and recovery months, but typically I try to keep a pattern of rest between work blocks. I doubt anyone feels great at 4pm but in particular I notice all my symptoms are at their worst in the later afternoon. Frankly people are onto something with siestas.
I’m honestly thrilled to have had an extended good day. I didn’t notice any major pain spikes at any point in the day. I can usually tell if I overdo it and need to rest. Sometimes it’s just a pain spike that forces me to lay down. That wasn’t the case today and even more excitingly I don’t think I dipped into any reserves to have a full day. I suspect I’ll feel fine tomorrow.
It’s honestly not that different from using up too much HP or lives in a video game. Sometimes you gotta do it but it’s expensive. And sometimes you go up against a boss and are like oh “huh” guess I’m stronger than I thought. Today I discovered I’ve actually built back up my HP. And I’ve still got all that old XP from years of grinding. It felt like I had misjudged the difficulty of a level I hadn’t played in ages. I was so sure I was going to get beat. But I sailed right though. And I’ve still got plenty of lives for whatever level I’m playing through tomorrow.
I’m feeling pretty good these days. I’ve written about my progress and my biohacking. But one area I’m not improving in is consistency. Despite meticulous record keeping and a routine I maintain assiduously, it’s almost impossible to predict when I’ll have a bad day. They appear at random!
Most days were bad days the past two or three years. The good days really stood out. I noticed them because they were rare. Now I’ve got a pretty consistent pattern of several days on and one day off. Sometimes I’ll even wrack up almost a week of good days. I used to have bad months and bad weeks. Now it’s rare for me to have more than three bad days in a row.
But I’m still regularly caught off guard by bad days. Out of the blue for no discernible reason I’m in pain, exhausted and struggling with basic function. The pain is the first symptom. Radiating out from my upper spine it pins me flat on my back in bed. About all I can manage in that state of pain is my phone over my face and the light gestures required to work a touch screen. But I don’t know why I have these bad days.
I can do everything “right” and be feeling terrific and then I’m fucked up all over again on a dime. Now I’ve got a small pharmacy I can toss at my symptoms now so I can often medicate myself back to a tolerable baseline.
The issue is what should I do once I’ve recovered? Do I rest? Build up my strength? I used to practice “active resting” where I would engage in restorative practices even when I felt well. The idea was I was building up a reserve of energy for the next crash. But was that the wrong approach?
I’m beginning to think I should take advantage of every last moment of health I have. If I feel well then screw the “active resting” I’m going to use every good minute I’ve got to pursue my goals. Active resting doesn’t seem to have any benefits I can reliably track. And it seems no more likely I’ll have a good day if I have rested then it is I will have a bad day. At best it’s marginally related to a poor night sleep but once I’ve woken up to face the day the day is cast there isn’t it?
I hate that I’m unreliable. I hate that I can’t track triggers. Doctors have seemed largely sanguine on the issue. Some days will just be bad. Sometimes your immune response will be off. But I’m feel lost and angry that I don’t know how I can live life without some degree of predictability. The only thing I can rely on is that on good days I feel good. So maybe I should just pack shit in on those days. No restorative crap. Just go hard at my goals. I’m not sure this is a good plan. It’s probably a bad one. It could just be my addiction to work talking now that my mind knows my body can handle my hard living again. At least for a few days. But if hard living doesn’t produce predictable crashes then what should my takeaway be? Fuck if I know.
The more writing has become a daily habit the more I can feel the ebbs and flows of my own voice. Some days I feel a passionate need to share some story or insight, and others, I feel like my voice can barely muster a sentence let alone a full fledged argument.
There are days where fully thought through essays seem to emerge with little effort. As if I wrote them in my subconscious throughout the day and it’s only the slight flick of focus that brings it fully formed to the page. Other days I need to scrape at the contours of my mind to see what fancies or novelties has passed through my attention through the day. Often in theses cases a bit of zeitgeist has stuck in a crevice and I can pull it out and expand on it. I can take a small nugget and chew on it till I find the juice.
I don’t mind the days where I need turn my eye within. The self reflection and additional effort is what I think may slowly be making me a better writer. While I don’t struggle with needing discipline to write everyday, I do need to exercise effort to find ideas that haven’t formed yet. The daily nature of the experiment is building out new thought muscles. It’s making my thinker clearer, faster and crisper. The regular exercise of thought and mind, whether I’m inspired or not, feels as if it’s making inspiration strike more often and my mind see clearly.
I’m getting the sense that a lot more people suffer from general poor health than we let on. When I discuss my own struggles my inbox blows up with fellow suffers of autoimmune conditions. People are fatigued, in pain, mentally sluggish and often struggle with adjacent symptoms like chronic inflammation or gastrointestinal ailments.
Please know you are not alone. As it’s rarely considered socially acceptable to be sick (it’s own issue) I’m going to use my position of privilege to discuss how I’ve hacked my way from completely disabled to about 90% healthy. I’m here to share what luck, power, and wealth have given to me so others with less may succeed like I have.
Step 1: Diagnostic Baseline
It’s really hard to do anything when you are sick and trust me I hate being told well nothing is wrong so maybe just lose weight, exercise and eat healthy. Like sure you fuckers I haven’t considered yoga. Fuck all the way off. But alas it’s true that in order to navigate modern medicine you need a baseline. Go to a GP and ask for a full blood work up. A blood test is typically composed of three main tests: a complete blood count, a metabolic panel and a lipid panel. Read up on what you might see on a typical blood panel. This article is a good place to start (I am not a patient of theirs and do not endorse them for care it’s just a reference).
Step 2: Pick Your Tools and Measurements
If it is possible (lots of folks suffering from chronic fatigue can’t) start on the basics. Order a tracker like a Fitbit, Oura Ring, Apple Watch or Whoop. Then pick an app that can help organize your data. I personally use Gyroscope. My tracking stack is a Whoop for strain & recovery and an Apple Watch for more generalized tracking like sleep, sleep and heart rate monitor. I use MyFitnessPal for food tracking. Strong for workout tracking. Calm for mindfulness, and Gyroscope syncs it for one dashboard. I also use an app called Welltory which uses HRV & blood pressure from monitoring it does in application as well as through syncing with Apple Watch.
An iPhone application folder with wellness apps including Gyroscope, Welltory, LifeCycle, Apple Fitness, Calm, Whoop, Endel, MyFitnessPal & Apple Health.
I also track my symptoms in a journal app called Day One as it’s the lowest friction place I can do simple logging of metrics like pain, mood and energy levels. I also use Google Sheets to keep track of my medications and supplements as I take upwards of 25 different pills and remedies a day (trust me I wish it didn’t work). While there is a lot of variance on workouts I always get hour of low impact walking (3 miles a day), ten minutes of mindfulness, and all my supplements. Like I never miss a pill. I’m happy to discuss my supplement stack with folks but here is a basic guideline of what I take that is provably good.
Step 3: Steadily Improve
Most people overdo it. You try to change a bunch of stuff all at once. Or you dive right into a big change. This is too overwhelming. And it can make you feel sicker (some folks call it a healing crisis). Just pick one metric and improve it by 10% over a week. Pick one activity you will do for 30 straight days. I said I’d write every day and here it is day 91. (Edit, I updated my stack on this post to reflect current use on day 355). The point is you can’t improve everything all at once.
Part of my success is simply telling myself I was going to run the experiment even if it was a failure. Biohacking requires that you don’t change up your variables too often or too quickly. You need to establish trend lines. The biggest mistake you can make is being “noisy” as you will never isolate the meaningful variables. And you won’t stick to it. So it’s a double fuck up. Clean reliable data matters. Don’t change too much too fast.
Step 4: Try Common Experiments
You don’t need to reinvent the wheel. Coming up with unique experiments probably won’t be necessary till you are well along your biohacking journey. My elaborate tests didn’t really start till this year after two full years of tracking. Start with common experiments others have shown to work. Fasting is a great place to start for metabolic health and fat loss. Walking makes a big difference in your resting heart rate. Being active once an hour has proven metabolic benefits. Try intermittent fasts and then if you see a benefit you can progress to 72 hour water fasts. Adding more protein to your diet is popular for a reason. Start with 20 grams at a meal and work up to a gram per ounce of your goal body weight. Eating more protein tends to shift your diet away from lower quality calories as it’s hard to eat a whole chicken breast and then eat a bunch of fried potatoes. Though I have tried. Work in supplements for whatever your bloods showed you to be borderline on. Vitamin D deficiency is common. If want to sleep deeper try magnesium at night. If you are tired B vitamins are proven. If mental acuity is your goal CoQ10, green tea and ginseng work for many people. Metformin is the top metabolic drug for a reason. If your lipid panel said you needed to lose weight or you have metabolic syndrome Metformin is your first stop. Like I said, there are a lot of proven hacks you can test out and incorporate into your life right now. Don’t be intimidated just work an experiment that has a high probability of success.
Anyone can begin biohacking with a goal, basic tools, and some patience. I’ve taken myself pretty far in the past three years. I’ve had great doctors but some of my success comes down to being willing to experiment with my body.
The American attitude towards healthcare leans heavily towards pharmaceuticals. Much of what ails us might be mitigated by nutrition, supplements, exercise or physical treatments. But we tend to prioritize a “one and done” approach that lends itself to prescriptions for any ailment you can pinpoint. It’s not unusual to be on upwards of ten pills a day if you are chronically ill each one treating a distinct symptom. You mostly pray they don’t have any interactions and that the cure isn’t worse than the disease especially when it comes to drugs like opioids that can form dependencies.
I’m not entirely opposed to this approach if I’m being honest. A wholistic approach is a lot of work and when you are sick having the energy to do a bunch of shit is unrealistic. Even as I’m rounding the corner on controlling my autoimmune disease I still find it time consuming and often exhausting to manage all aspects of my health. The meal planning, the physical therapy, the body work, the exercise protocols, the sleep regimens, the supplement routines (mine easily costs upwards of $500 a month and no it’s not covered by insurance) and the nonstop recording and monitoring is practically a full time job. And you can’t even tell if it’s working half the time with crashes and system cascades that require heavy duty intervention. It’s hard to spot signal in the noise but that doesn’t mean it’s not there
Being sick in America feels surprisingly similar to being a startup founder. You get dismissed constantly. The workload rarely relents. And progress is only visible if you are diligent about monitoring core metrics that might reveal a trend line. It’s no wonder that entrepreneurs can be avid biohackers. We record and measure and monitor and hope that some higher authority (a physician or a venture capitalist) will spot the the key inflection point that may change our lives.
I have over 1,000 recorded data points just on my usage of pain medications and it’s correlation to my functionality. Despite my meticulous tracking and my adherence to protocols, I regularly have encounters with medical professionals that discount what I have to say. Like a founder I may be an expert on my “startup” but a physician or other expert has a lot more longitudinal data. The question ends up being do you as the operator (or the patient) have some insight the professionals do not? Honestly it’s hard to tell. Being wrong is pretty common. Doctors and venture capitalists know this. So do you as the patient or founder. Trust in these interactions can be low because of this.
Unlike with a company where you can walk away, being a patient means you are stuck with it. I have to work through the blocks as if I don’t I’m resigning myself to a life of illness. Which isn’t to say I can’t tolerate being ill and disabled, merely that I don’t believe that “this is as good as it gets.” I’m happy with my life but I do believe it’s within my control to do and be more.
For me this has meant juggling the pharmaceuticals that control symptoms but don’t heal me alongside an elaborate functional medicine and biohacking routine. I think of these drug for symptom regimens a cash flow business that can do well but will always remain the business that it is without a creative owner pushing for more.
I don’t want to just run my “business” even if it might be a self sustaining one. I’m at a point where yeah I can live like this for the rest of my life. But I want more than having a store or a service. So I test. And I experiment. And I throw tons of time after protocols and treatments that may be woo or bullshit. Or they may in fact be the turning point that lets me be more. And if it is then it’s all worth it. Much of what I’ve done has been worth it. But how the fuck do you determine that in a system that has so little interest beyond simple solutions like a pill? If I had the answer I’d tell you. Until I do I’m spending my time on machines that shoot electromagnetic pulses into my spine and glugging down micronutrient slurries. I hope the hacks turn into sustainable growth channels. But I could have just waisted a few hours on nothing. Until then I’ll record the data and hope the trend line reveals something.
It’s only with hindsight that I realize pain has been a persistent companion in my life. If something is normal for you the grandiosity of ego can tend to make you assume its true for everyone else. I spent much of my life thinking it was normal to be in pain, to be tired, to feel unwell. Life is suffering right? As it turns out no most people are not suffering from debilitating pain. I was not normal.
I’ve been feeling well recently and when I have extended stretches of health the memories of pain fade. This is good as pain is an insistent companion. They tell you to ignore your pain or place it on a shelf or some other “removed” metaphor but I’ve always found this to be bad advice. You can channel all your focus elsewhere but the pain is there. And worse, now you are using all your energy to pull your attention away instead of what you may have preferred like work or a hobby. It’s a consuming experience one way or the other. You can feel the pain or you can feel the force of your willpower but regardless you will feel. Pain is demanding.
When pain is chronic you think you will get used to it. That perhaps it becomes a background noise after a time. The way you get used to a television or radio playing in another room. But it’s not really like that. My pain is in my spine. It comes from a swelling that chokes out the nerves. The worst spots for me are between where my bra strap would land and my mid back. At its worst it runs the length of my spine and impacts my ability to walk. There is no comfort to be found with this pain. Sitting up. Standing. Even laying down. It finds your attention. It does not give reprieves.
They say that pain is a teacher. This is a lie, at least when it comes to pain beyond understanding. I suppose understandable pain could be used as a correction, as part of a causal learning process. Pain beyond understanding, though … pain beyond understanding teaches you nothing.
I live with a lot of pain beyond understanding. When it grabs me there is little I can do but hope to survive. It consumes. You have tools to fight but more often the only reaction that makes sense is fighting to relieve it. As Ben said, it has nothing to give me. It teaches nothing in this state. It’s beyond sensory inputs. This pain envelopes you into another reality. And when it is relieved you pray it will never reappear again. I know that it will. But the fear of it makes me bargain with myself. I say I will redouble my efforts to fight for my health. As if I weren’t doing as much as I can. I remind myself I have pain medication for a reason and I should simply take it. Sometimes I do.
Pain doesn’t care. It isn’t an enemy. It simply exists and you pray the tools you have will relieve it. When a true 10 on the acute breakthrough pain comes all you can do is hope to survive it. And when it is relieved the sweetness of its passing is like no other pleasure. It’s like having your humanity restored.
I didn’t used to keep much of a routine. Startup life and Manhattan nightlife made for a lot of variability in my days. But the trick of losing your body to sickness means that you don’t need the novelty of nightclubs or the emotional highs of startup life.
My body now provides all kinds of surprises all on its own. I can feel terrific one day and the next for no apparent reason I’m practically immobile from pain. The frequency has gone down significantly this year thanks to modern medicine and a lot of biohacking but let’s just say I’m grateful I work on the internet so no one cares if I’m flat on my back typing in bed.
But one things I’ve found to be extremely helpful in managing the foibles of an unreliable body is a deliberate routine. I honestly wish I had learned the value of routine earlier in life. Maybe I’d be healthy now if I had shown the same dedication to supplements, exercise, meditation and sleep. Objectively that’s probably unlikely as some stuff is just chance and generics but man when you find something that works you want to retcon your whole life.
But there is a downside to routine. You cannot get sucked into work manias because you have to stop to meditate or take a supplement or get in a workout. Routines keep you from meandering as you can fill a whole day with good behavior. But life sometimes needs more randomness than a strict day of check lists. Today I felt like an entire disappeared to my routine and while physically I feel well I’m not entirely sure I got anything done despite having taking all my pills on time. I lost time between all the good things I was going to keep stable. Sometimes I worry that all this effort will keep me from the creativity and serendipity of a life lived without good habits. But then I might end up sick and back in bed so I hope it’s a fair trade. But I still worry I’d rather lose time to work binges or nights out.
