Discovering Uncertainty

Remember when you were an adorable and lovable (yet exhaustingly inquisitive) child naturally gifted in the art of the brain ninja? Under the cloak of cuteness, you would stealthily slice open the skull, one throwing star at a time, each inscribed with a seemingly innocuous, three-letter word, the simplest of all questions…”Why?” Death by a thousand cuts. They never stood a chance.

“Why do you have longer hair than daddy?”

“Because women tend to have longer hair than men, sweetie.”

“Why?”

“Because women like to be pretty.”

“Why?”

“Because magazines make us feel like we have to be.”

“Why?”

“Because they collude with department stores to sell us things.”

“And with Russians?”

“Yes, sweetie…and with Russians.”

In fact, one of my favorite blogs…sorry…content sites of all time, Wait But Why, is entirely based on this inquisitive, perpetual drilling into the root canals of human existence. It can be painful, but we keep going anyway because, well, we want to know the answers! Also because the dentist is doing the drilling, and they don’t feel a thing, much like the deadly accurate brain ninja with their throwing stars.

The War on Uncertainty

Humans hate uncertainty. In fact, studies show it to be uncomfortable to a surprising, almost counterintuitive level, but it makes sense if you think through some examples. Suppose you’re walking out of a testing center having just taken your entrance exam for clown school, on the precipice of making your lifelong dream a reality…which self dialogue would be most stressful?

1. I totally aced that thing! I’m going to be a real clown now!
2. Welp, I totally tanked that test! Oh well, there’s always next year. Or maybe dreams are for suckers.
3. OMG! I have no idea how well that went! I can’t believe they make you wait three whole weeks for the results! This is worse than waiting for my girlfriend’s period back in college!

If you’re positive you passed, of course that’s not stressful. You’re confident in the results, and the results are going to be the best kind! If you’re positive you failed, at least you’ve resigned yourself to your fate, and you aren’t getting your hopes up. But if you have no idea whether you passed, if you feel as though it could lean either way, your next three weeks are going to be excruciating. Not knowing the results can be more stressful than actual bad results!

Don’t believe me? Read the research!

It sorta reminds of that old survey where Americans’ number one fear is public speaking and number two is death, a confounding paradox so perfectly captured by Jerry Seinfeld’s poignant observation:

“If you have to be at a funeral, you would rather be in the casket than doing the eulogy!”

On the flip-side, of course, we love certainty. McDonald’s hamburgers taste like monkey feces, but you damn sure know what you’re getting when you pull into the drive-through by the arches. The famous Harlem Globetrotters have been (mostly) beating the Washington Generals since the ’50’s (except for a couple oops games which are hilarious to read about). Vanilla is still the best-selling flavor of ice cream. The good guys win in like 99.9% of all movies. Steven Seagal always breaks someone’s arm. Dennis Quaid’s stern warnings always go unheeded by the authorities. Liam Neeson always has people taken from him.

Coming straight to Blu-ray!

It almost seems as though humans were programmed and sent to the earth to systematically remove all uncertainty, map all corners of the land, dive all depths of the ocean, answer all life’s questions, and find every last Pokemon. We tear uncertainty down and build shopping malls. You could even say we paved uncertainty and put up a parking lot; amirite, Amy Grant?

But not all uncertainty is created equal. No one ever lost sleep pondering who was going to win Best Polka Album at the Grammys. Not only was it a rather obscure category that – sorry, polka fans – few cared about, it was also fairly predictable with Jimmy Sturr having won eighteen of the last twenty-four years when the category was terminated in 2009 to remain “relevant and responsive” to the music community.

So what is it that really gets people’s panties in a wad (besides wedgies)? From my experience, I would have to say medical uncertainty, with weather being a close second. I can’t back that up empirically, but even if it’s not, let’s pretend it is so the rest of this post makes sense. Fair enough? Fair-e-nough. That last bit looks kinda silly isolated…what is “nough?” It’s about as mysterious as “nougat,” both phonetically and practically. Anyway…’nough said.

How Many Doctors Does it Take to Change a Lightbulb?

That’s right, uncertainty of the medical variety…it rattles you straight to your core. It can include a level of actual, physical suffering or pain. It might have a direct impact on what you can and can’t do in your life, sports, work, etc. But probably most important of all, it’s a very direct trigger of our primal fear of death. I also don’t think it’s a coincidence that the most read Bert Betterman post to date deals with that very topic – “Is Death Really Inevitable?”

I’m certainly no stranger to medical uncertainty, and no year of my life has been better proof of that than this my thirty-fifth (also the year I started salting my beard). Years of odd biological happenings sort of climaxed this past winter into the situation that I partially addressed in “Friends in Cars Going to Work.”

I’ve been wanting to know “what’s happening to me?” for years now, but not every medical issue is as simple as a blood test and a pill bottle. Or fifteen minutes of using Symptom Checker on WebMD. And sometimes it’s all in your head, nothing at all, just a bout of worry or anxiety (not that they’re a walk in the park either). So yeah, it gets frustrating, that old uncertainty.

Even still, what surprises me more is the extent to which other people, mostly friends and family, seemed to be frustrated for me. They all seem to be angry with or disappointed in or dumfounded by my doctors. They’ll say things like “I just can’t believe with all this technology they can’t find you some answers!” or “How many doctors do you need to see to get an answer?” or slipping it into their well wishes like “Well I sure hope you find some answers soon.”

Answers and Questions

First of all, I’m super glad people care about me. I’m glad that they want someone to figure out what’s going on, put it on paper, and give me that pill or that thing that makes it “better.” It tells me they care, and I’m beyond grateful for that.

Second of all, lest anyone think I’m complaining or pining for attention, I’m doing pretty well in the grand scheme of things, really. I don’t know what it’s like to have cancer and go through radiation and chemo and all that, but if what I’ve dealt with is even 10% of that discomfort, I’d be shocked.

That said, uncertainty can be a bitch sometimes. Both the symptoms and the persistent wondering and searching have slowly sucked the life force out of me for at least a good five years now. It’s been that long since I could stand and talk to someone without getting super tired and having a subconscious timer in my head keeping track of how much longer I can carry on with the conversation before I’ll have to sit or lie down.

That’s a far cry from running four miles and then deadlifting three hundred pounds. Or playing a game of basketball. Or from being able to walk and play thirty-six holes of golf in a day. Or helping a buddy move furniture. Or even getting through a full yoga class. Or running at all, at any speed, for any length of time. I haven’t done any of those things for the better part of four years now, full disclosure.

At my lowest point, after I’d get home from the office, I’d have to make a choice between emptying the dishwasher or doing laundry because doing both was often too much to muster after a full day of sitting at a desk. That’s kind of a weird sentence to read back to myself, actually. Things are better than that now.

When I started to add together the extent of my life-altering situation with the duration for which it persisted, eventually I had to concede that something was going on. I didn’t just need to rest and recover. I didn’t have an injury that needed to heal. I didn’t just need to stretch out my hamstrings or strengthen my core. I had no disc problems or broken bones or torn tendons. I knew what I didn’t have, but I didn’t know what I did have – and neither did anyone else – but certainly this wasn’t “normal.” I know sixty-year-old couch potatoes who never set foot in a gym but can still stand for an hour or lift a bag of water softener salt.

I wasn’t finding any answers.

Finding answers implies a level of certainty that can be attained. Those “fortunate” enough – at least in terms of certainty – to have something a doctor can test for, like the flu or a torn ACL, can at least go home with a label and a prescription and some level of certainty that they’ll recover, a timetable to follow. At weak moments I find my reptilian brain jealous of the diagnosed folks, though intellectually I know how preposterous that sounds.

“Traditional” or “Western” medicine has a tight relationship with certainty. Tests provide labels. Results are positive or negative. The research is based on double-blind studies. Things must be proven. There isn’t a lot of theory…rather than trying to explain something beyond their current reach, they’re more comfortable saying “science hasn’t figured that one out yet.”

It’s a conservative approach, which is probably prudent for a field dealing every day with some probability of death. Even something as routine as a tonsillectomy comes with a 0.012% risk of mortality. The post-op ice cream may help sooth the sore throat, but it’s also a subtle celebration of not having been the one in twelve thousand poor saps who lost their life during a “routine” surgery.

I’ve gotten part of my discovery out of traditional medicine, but it took a concrete, “slap-you-in-the-face” symptom like losing consciousness to get them to take a serious look under the hood. It all led me to an electrophysiologist (heart rhythm specialist) that has basically concluded, though he admits it’s not a 100% classical diagnosis case, that I have something called Postural Orthostatic Tachycardia Syndrome (POTS). My primary doctor concurs.

I love how medical terms basically say simple stuff in fancier words! The words “postural” and “orthostatic” refer to your blood pressure while upright, and “tachycardia” means a fast heartbeat…your heart beats really fast when you’re standing. Tell me more, Mr. Science!

Sorry…doctors truly are smart, but I have to give them a hard time when they try to make the rest of us feel dumb by simply using fancy synonyms for common words, much like Alan Greenspan’s remarks on one of his Federal Reserve meetings.

The deeper explanation of POTS is that you have two methods of getting blood moving, one being your heart pumping and the other being your veins and musculature “squeezing” to push it back to the heart (also density differences in fluids and external energy sources such as sunlight, but we’ll keep it simple here). POTS is an issue with the squeezing part, so blood pools down in your legs when you stand, then your heart beats faster to compensate, and the inefficient blood transport leaves you with symptoms like dizziness, fatigue, and sometimes loss of consciousness. Basically.

Why does this happen? Well, it depends on how much certainty we require. If we have to be certain, then the answer is “Science hasn’t quite figured that one out yet,” which is fair; I don’t necessarily want half-baked, incorrect answers either.

If we suspend the need for certainty and diagnosis, though, the research shows a few working theories on the “how.” The different working theories are also postulated as different subgroups of POTS or maybe even totally different conditions that present similarly.

One is kind of an adrenal concept. For some reason, maybe genetic, maybe not, a person may have higher levels of adrenaline. This fight/flight chemical dilates blood vessels to shunt oxygen out to extremities (like the legs) to fight or flee. Then the heart beats faster to boot.

Another is an issue with blood volume being too low. If someone doesn’t have enough blood, it’s harder to fill the vessels and maintain blood pressure. These lucky folk, myself included, get to eat all the salt they want.

A third is a nerve theory. There may be a neuropathy or some other nerve damage that cuts the line of communication so that the vessels don’t know they’re supposed to be squeezing when you’re standing. This one is kind of an information/signaling problem.

But even with any of those explanations, the question would still remain…”Why?” Why is my adrenaline high? Why is my blood volume low? Why don’t my vessels communicate well with my brain and know when to squeeze? Well, science just hasn’t quite figured that out yet.

Enter Functional Medicine: A Compliment to Traditional

One thing that I see as being different about functional medicine is their willingness to look at everything going on as a holistic picture, try to connect the dots and make sense out of it based on research and theory, even if there isn’t yet a 100% proven, double-blind study sort of deal. It’s not to say they’re guessing, but it’s more of an art form in some ways. An exercise in probability, so to speak. They can say “odds are” this is the big picture environment we see with you that is probably causing your symptoms, and these are likely ways we can nudge your body back in the right direction. And we’re going to do it with food, supplements, and lifestyle changes rather than drugs.

I find this a helpful way to fill it the gaps where the certainty of traditional medicine doesn’t yet have “answers.” Where a traditional “test” for a “disease” may have a negative result – you don’t have the thing – functional medicine can paint colorful pictures on a spectrum that might explain symptoms before you have a fully diagnosable “disease,” or possibly even have treatment ideas for a disease that proven science hasn’t fully fleshed out yet.

Let’s say that normal levels of “Important Human Plasma Compound Z” are between 5.0 and 8.0. For sake of clarity, by the way, I should tell you that’s a made up thing. If your IHPCZ levels are as low as 4.0, it becomes common to experience dizziness and fatigue. If you’re as low as 3.0, you could suffer from a heart attack. If it nears 2.0, you could die. On the other side of the spectrum, super healthy people are at 10.0, and most professional athletes see levels of 12.0-14.0.

A traditional test for “Important Human Plasma Compound Z Deficiency Disease” would be positive at 4.99 and lower and negative from 5.0 all the way up to 20.0, but do you suspect a person would feel very different with levels of 5.1 versus maybe 13.2? Or what if they were 9.3 last year and now they’ve fallen all the way to 5.1? What might the test show in a month or two if that drop continues? A simple positive/negative at one snapshot in time, while very specific and “precise,” doesn’t tell much of a story.

Functional medicine hasn’t given me a diagnosis (an “answer”), but it’s given me a story, a colorful picture, a probability graph, a pattern of data to suggest a certain narrative. That story, as of today, reads something like this:

I have a smattering of infectious and opportunistic bacteria in my gut coupled with low levels of “good” probiotic bacteria. I was a C-section baby and took tons of antibiotics as a child for strep infections, which could have set that stage. My gut calprotectin levels (measure of inflammation) are 120. Anything over 50 is “high,” and someone with a gut autoimmune disease like Crohn’s or Inflammatory Bowel Disease would be around 150 or higher. My gut Beta-glucuronidase (an enzyme secreted by “bad” bacteria) levels are over 4,000, more than double “normal” levels, which inhibits liver detoxification and hormone production.

I also have some genetics working against me. I have a specific polymorphism that reduces my ability to produce gut antibodies (fight infections) and another that lowers my ability to metabolize catecholamines, mostly stress hormones like adrenaline, so that once I get biologically stressed, it takes a longer to recover. If you remember, one of the POTS theories is the high levels of adrenaline shunting blood to the legs, so that’s very possibly part of the cause.

Not exactly an easy, ten-second elevator pitch.

In short (or short-ish), I have an inflamed gut driving some level of autoimmune activity, but it’s “subclinical” in nature, meaning I don’t technically have any diagnosable disease of autoimmunity at this point, but it’s verging on that possibility. The autoimmune activity is probably affecting my tissues in my legs (blood vessels, nerves, muscles, or all of that) and creating my POTS symptoms. It’s also probably affecting my thyroid because for the first time in my life I recently showed TSH levels consistent with hypothyroidism.

That’s my story, and those are the best working explanations I have right now. I don’t test positive for Crohn’s or Inflammatory Bowel Disease because there isn’t enough damage at this point to see. I don’t test positive for Rheumatoid Arthritis or any autoimmune muscle disease or anything like that because those tissues don’t have enough damage yet either. More recently an argument could be made to diagnose Hashimoto’s, an autoimmune disease damaging the thyroid, but no one has put that on paper. In fact, I still don’t know if my electrophysiologist will put POTS down as an official diagnosis yet.

By the way, I’m hopeful none of those things ever get officially diagnosed and it all just becomes a distant memory sometime in the future. I’m just trying to make sense of it for now.

Despite this fuller and fuller picture that we’re coloring in, one pixel at a time, I don’t technically have an “answer” yet to tell people when they ask me the question “What’s your diagnosis?” And that’s what I’m learning to be okay with. While having a “thing” on paper would give me something to tell people – which part of me desperately wants – it doesn’t really change reality in any way.

The human body is so damn complex that it takes a long time and a lot of data points to start putting together any meaningful, long-term picture of how your body is dealing with its environment. So for a very long time, even “answers” aren’t really answers themselves, but rather stepping stones to more questions and more uncertainty. The more you learn the more you realize you don’t know.

Uncertainty Breeds Anxiety

That level of medical uncertainty caused an old monster to rear its ugly head: anxiety. Of course, everyone has anxiety at times, it’s an emotion after all, but there have been times in my life where it metastasized into something beyond that, and this was one of them. You can call it a disorder if the label quenches your thirst for certainty, but it doesn’t change anything on this side of the laptop screen.

Yeah, that’s the anxiety monster. Is that not what you expected it to look like?

I think the more uncertainty you deal with – the more that things feel out of your control – the more you look for things that you can control, becoming much more rigid and routine in other areas of your life. Having medical tests pending in the cloud like EEGs, EKGs, MRIs, CT Scans, blood tests, neurological tests, ultrasounds, and genetic tests can shake your foundation a little bit. Not knowing if you’re going to pass out at any moment can too. Not knowing why you’re passing out even more so. It’s not a big deal (long-term) if you’re just, say, dehydrated. It is a big deal if it’s a heart defect or a brain tumor, though.

While you can’t control any of those things, you can find other things to control. You can control the time you wake up. The time you go to bed. What you eat for breakfast. What shirt you wear on Tuesdays. What socks you wear on Fridays. The ritual of things you have to do before getting into bed for the night. It makes sense how one can develop OCD when they’re feeling a control deficiency.

I flirted with some cute little OCD patterns as a kid. I liked symmetry. I liked even numbers. I used to count syllables. If I were having a conversation with someone and they said something like “Hey, Brett! How are you?” which has five syllables, I would have to reply with something else that had five syllables so that the collective would contain ten syllables, something like “I’m good. How are you?” And if I couldn’t accomplish that in a conversation and developed a control deficiency, I had my own little antidote in my head, a sentence I made up that I would say over and over again because it had exactly ten syllables:

Come on, let’s go, you guys. Uh-huh, okay.

Come on, let’s go, you guys. Uh-huh, okay.

Come on, let’s go, you guys. Uh-huh, okay.

Come on, let’s go, you guys. Uh-huh, okay.

Come on, let’s go, you guys. Uh-huh, okay.

Come on, let’s go, you guys. Uh-huh, okay.

Fortunately, I was somehow able to break myself of this, or just grow out of it. I’d still have spats of OCD and anxiety here and there, but they were usually isolated incidents. When life got crazy, though, it would be a snowball thing, a spiral thing. Here again with all the medical uncertainty, all the possible diseases and disorders and whatnot, and all that time to think (while staying in a hospital or sitting at home not driving and not exercising and not doing much of anything), the thoughts would multiply upon themselves like horny little bunnies in spring:

I could feel my heartbeat there, was that a palpitation? Should I hit the button on the heart monitor? Or did I just feel it because my back is pressed up against the pillow? I mean, you can feel your pulse if you squeeze your wrist, right? That one was definitely different, though. Now it’s beating faster. I thought it was only supposed to be faster when I was standing up? What happens when it does this lying down? Is that something else? Does that mean I do have Brugada Syndrome? I don’t get that test back for a week yet. If I do, I could go into cardiac arrest. Should I be going to sleep? What if I don’t wake up?

But I’m probably not going to die. I just need to get some sleep. Okay, how do I calm down my heart? Breathing exercises. Then I can relax. Then hopefully I can go to sleep. How many hours do I have left? I can’t go to work on little sleep. I have to be getting sleep to heal or recover from whatever this is, but I don’t know what it is yet. And if I don’t sleep well, I’ll be shot for work tomorrow. And if I’m shot from work, then I won’t have energy to write when I get home. And if I don’t do something creative or have an outlet I can’t deal with my stress and everything else gets worse.

Will my writing still be creative an interesting on Prozac? Was it ever interesting? Should I even be taking Prozac? Will being on it even for a few months permanently affect my ability to produce natural serotonin? Should I even be writing about this? Are people going to think I’m crazy? My parents are probably disappointed that I’m taking an antidepressant…and for anxiety. Why do they give you antidepressants for anxiety? Should I be taking something else? I should have stuck to my original decision and told the doctor I still didn’t want to take it? Maybe I should call him again tomorrow.

Get to the Point, Rachel Maddow…

I happen to love Rachel Maddow’s show. First of all, as I’ve mentioned before, though not thrilled with it (biggest understatement in the history of this blog), I can’t help but be addicted to following the insanity of this presidency. There’s probably also a subconscious life-preserving function in there somewhere given how out of the norm it all is.

Second of all, I love how she can go on for twenty-five minutes about something so seemingly unrelated, so long that many people might mentally tune out or actually turn the channel, and then they all miss the amazing connection that happens at the end…but not me and the eight other people who stayed till the bitter end…like the last stragglers at a house party trying to find one last warm beer in the garage to wash down the crumbs at the bottom of the last Doritos bag while listening to Piano Man for the third time. In a row.

It’s all relevant in hindsight, and that long story helps you make better sense of the point, but many people don’t want to wait half an hour for the punchline. We’re an increasingly impatient society.

I hear the same thing about my posts here occasionally. “You know, if you’d just make things a little shorter and easier to read…” or “I would read it, but they’re soooo long sometimes…” Yet, the more I hear it, the longer I want to make them. A stubborn bastard, I am.

It’s like my subconscious way of flipping a middle finger to the impatient part of everyone’s brain, the part always skimming every article for a quote or a Tweet. While that might give you your fix for the day and let you move on to the rest of your to-do’s, I find the lack of depth and rigor rather unsatisfying, and, if I may step up on my soapbox for a quick second…I believe it’s dumbing down society.

You can’t understand what’s going on in the world by reading the headlines. You can’t ace the final by merely skimming every other chapter of the textbook. You can’t understand your problem if you don’t really KNOW your problem, inside and out. And if you want to get the quote or the Tweet or any part of the moral to the story – or to life, really – make yourself comfortable, cause you’re gonna be here a while.

There, that ought to weed out most of the posers!

So for those of you that stuck it out with me, warm beer and empty bag of Doritos in hand…please check back next week for the moral of the story…watch this space.

Just kidding…here are some quotes for ya:

Knowing what you don’t know is probably more important than knowing what you do know.

Or how about this…

Becoming comfortable with uncertainty is probably a great life skill to learn, and I say “probably” because I don’t know for certain, and I’m learning to be comfortable with that.

Theoretically, I believe that if we had enough time and resources, and we could gather all the information, we could know everything. Literally every problem is solvable. Everything is predictable. But given that our universe has time and energy constraints – and we’re just silly little humans – the reality is that there will always be uncertainty. And until you internalize that concept – until you “discover uncertainty” – life is always going to seem like more of a struggle than it has to be.

It really is that simple (though “simple” is not a synonym for “easy”). Anxiety is a feeling of worry, nervousness, or unease about an uncertain outcome. It’s your body preparing you for fight or flight, just in case you need it. Nothing more, nothing less.

Anxiety is a bitch, but what’s worse is being anxious about being anxious. It’s an emotion naturally triggered by your body, so you can’t get rid of it, but if you understand it for what it is, use it as a resource, and don’t freak out about freaking out, you can manage it.

I’m also not saying you should stop trying to figure things out. Of all things I’m certainly not a nihilist. I think life is worth living and that there are things we can do to make life better or worse for us and others. We’re not in control, but we have a say. The subtle mind shift I’m trying to engineer is that the process of figuring things out leads to way more new questions than answers, and that’s a good sign often misread as a discouraging one. You didn’t fail at finding answers, there just turned out to be way more steps to getting to the answer than you realized.

Or as my friend who helped co-create the title of this post put it: Discovery implies acknowledgement of something new, a sense of control but a lot of unknowns. An answer that leads to a lot of questions in and of itself.

Once you discover uncertainty, it’s an exciting, self-guided adventure, but still one that you don’t know the ending to. And why would you want to? (But sometimes I really do want to, though!)

I’m never going to know everything, and that’s okay. Sorry, I had to stop talking to you and talk to myself here for a moment because it’s really me that needs to learn the lesson here (I hope you didn’t think I was yelling at you earlier, did you? My apologies, mate). If this self-dialogue is helpful for you too, all the better. I’m going to be openly selfish for a moment while you finish reading along.

I may not have a perfect diagnosis, but I have ideas as to what’s going on. And my lack of information doesn’t mean that I can’t act on the information I do have and tweak and correct course as I gather more. People may not understand what’s going on with me, and I might not be able to explain it – at least not without their eyes glazing over – but that’s okay. They might think I’m making it up or dramatizing it. Or they might think I’m not taking it seriously enough and not seeing enough doctors (I’ve heard plenty of both). But I have to work towards being okay with all of that.

I’m on my way now. I’ve discovered uncertainty. Now the rest is learning how to sit with it in peace.