I’m about to test in taekwondo again, another in a long line of tests to (in theory) get me to my first degree black belt. I’ve already got the belt itself, and earned the right to have my name stitched into it, but it will be at least another two years or more before I have the right to stitch that first golden bar beside my name.
It’s tradition at each test to write a paper regarding “where I’m at” in my practice of taekwondo–a literal “state of my art” essay. “The Phantom Fourth” is my statement for this coming Saturday’s test.
But if you’re reading Cixin Liu’s book The Three-Body Problem right now, or plan to, you might want to skip this post, because spoilers. I will attempt to keep spoilers to a bare minimum, but Liu’s points are intrinsic to what I’m trying to do here. So, lector cave…reader beware.
The Phantom Fourth
It’s strange to realize that I haven’t tested in a year. Almost to the day, in fact. And it’s even stranger to realize that, as of the last paper I wrote, I didn’t know I have MS. I was still worried exclusively about cancer. And even then, I was having an anxiety attack just writing that paper last year. The thought of actually testing was worse. That’s why I’m shocked that it’s been a year. The last test still feels like it just happened.
To be fair, that’s not the only test that feels like it just happened. It’s been eight months since the lumbar puncture (LP), and I’m still dealing with spasticity, balance, focus, anxiety, and continence issues that began virtually overnight with that test.
Well, that’s not true. I’d better rephrase.
Many of those symptoms were happening long before the LP, but I (incorrectly) ascribed them to other causes. Stress incontinence? Oh, that’s just age and childbirth. That won’t get any worse. Spasticity? Oh, that’s not spasticity, that’s just age and stiff muscles because of a bad winter. Staggering off balance hard enough to clip door frames? Pfft, honey, you’ve had balance issues since the ocular melanoma (OM) in 2016. And lack of focus? Well, dearest, of course you’re having issues with your ability to concentrate, you’re a cancer survivor…
Then suddenly I couldn’t chalk those symptoms up to the scattershot effects of age or weather or cancer or stress anymore. I had a diagnosis that explained them all in one go: multiple sclerosis (MS).
Even though I expected the diagnosis, even though I begged (!) for the LP, finding out that I’ve been right all along—that I didn’t develop one major disease process in 2016, but two—knocked me down hard. I was mentally and spiritually fine when I could wave away each of those symptoms because I thought they were separate issues that would remain manageable. But then I discovered that they really weren’t separate at all…that they were all working together, as symptoms of a big diagnosis that I hadn’t even realized was standing next to me until it was too close. And those symptoms were no longer just manageable annoyances; they were hints at the potential for worse. I suddenly felt like a traveler benighted in a dark forest, holding a guttering torch, realizing that those eyes glittering all around me were wolves working together as a pack, closing in.
I was prepared to hand over my physicality to old age. I was prepared to hand over my mental sharpness, my overclocked memory, and my ability to hold and string together an improbable amount of information concurrently. I was even prepared to hand over things like my continence, my largely pain-free existence, and my ability to touch my toes. Because old age comes to us all, I was prepared to hand myself over to it slowly.
Instead, I’m 46 years old, and I have to hand it all over now.
And instead of being angry about this, I have to be grateful…because, in the words of my oncology team from TJU, “Making it to the two year mark is a big deal.”
I get to be grateful that I look like a complete idiot when someone asks me a question and I get the answer wrong multiple times before I finally manage to give the answer in the correct way that I knew from the beginning of the conversation.
I get to be grateful that I’ve only been in the emergency room twice this year (thus far).
I get to be grateful that there’s still one more MS drug I can try, because I survived the 180/113 blood pressure spikes and 109bpm heart rates and the kidney function drops and pneumonitis and gastritis and nausea caused by the previous drug.
I get to be grateful that there’s a reason that doing spin kicks in taekwondo has become difficult. They’re acting as a form of occupational therapy for the scarred parts of my brain, the ones responsible for balance and proprieception while moving at speed through a curve. Without spin kick therapy, I might no longer be able to drive.
I get to be grateful that my back and neck and legs constantly erupt in buzzing, half-asleep tingles as a warning that I’m doing too much. I get to be grateful for the locked-up muscles and the sensation that someone is pressing hard on my forearms and calves as a warning that I’ve done too much. I get to be grateful for spending the next day or two exhausted and shivering on the couch with a one-degree fever and chills as penance for having done too much.
I get to be grateful that I recognize that mowing the lawn on a cool day is now officially “too much.” Or that going to taekwondo and doing grocery shopping on the same day is officially “too much.”
I get to be grateful that I know not to eat grain or dairy.
I get to be grateful that I can still correct myself when I constantly screw up words when I type.
I get to be grateful that I can still chew and swallow my food.
I get to be grateful that I fall asleep involuntarily on the couch for two to three hours at a pop.
I get to be grateful for injection training for my next medication attempt, and that I’ll only have to self-inject three times a week.
I get to be grateful that I’m continent most of the time.
I get to be grateful for randomly bursting into tears in front of people.
I get to be grateful that the MMOMAs see me at the best part of my day, because it’s all downhill from there.
When did my motto become, “At least it’s not worse”?
At first I called this paper “The Three-Body Problem.” It’s the name of a sci-fi novel I’m reading right now, written by Cixin Liu. It’s also a physics problem. Briefly, the three-body problem is this: when three roughly-equal bodies are in orbit with each other, they won’t just follow each other around a center point (a phantom fourth, if you will) like the cars of a train on a circular track. Those three bodies will orbit each other erratically, sliding in and out past that center point and around each other in a non-repeating triangular dance so complex that no one has ever been able to compute a mathematical path for it all the way to the end. If, as in the sci-fi novel, the three bodies are suns and that center point isn’t empty, but contains a tiny planet…woe betide the planet and anyone on it. Over and over again, the three suns will cycle between frying the planet and then abandoning it to the cold of space as one, two, or even all three suns will either crowd close or stampede to a far end of their orbit. Sometimes, the suns will pass so closely by that the tidal forces will pull the planet to pieces. The three-body problem is a brutally elegant symbol for bounded instability in nature.
I am officially the phantom fourth at the center of three major disease processes: Hashimoto’s, OM, and MS.
I am literally a walking, breathing, bounded instability. As my disease processes orbit erratically around each other, my symptoms will come and go, disappear and intensify, the way the suns in the book fry that planet or leave it cold or give it a blessed, Goldilocks kind of day.
In the book The Three-Body Problem, the Earth is subject to a three-way battle over its future: will aliens come to us as conquerors, or will they come to us as helpers, or will they die before they reach us? Various human factions literally kill each other over the ability to influence that decision. There’s great hope in the book, but I haven’t finished it yet, and I have a terrible suspicion that it won’t end happily—because the next book in the trilogy is entitled The Dark Forest. That phrase is derived from one of the real-world possible answers to Fermi’s Paradox, the great question of why we haven’t found other life in the universe. The dark forest hypothesis states that we haven’t encountered alien life because we haven’t yet realized that everybody else is keeping quiet for a reason.
If you need more of a hint about why everybody but us might keeping mum, just reference my analogy up there about the wolves.
Yes, it’s been difficult, living my life as a bounded instability. And I really don’t like this dark forest in any way. But what’s become more difficult for me is realizing that I’m not alone in this, and I’m not talking about having diseases. I’ve come to realize that every human being is a three-body problem.
Take any three you like.
How about the macro view: soul/mind/body. Male/female/other. Race/religion/class. Science/faith/cynicism.
Or the personal view: well/sick/recovering. Able/unable/adapting. Living/dying/waiting.
Any one of these triads is an unstable, ever-changing system that affects the daily lives of the humans who have them. And we all have all of them. Every one of us is not just one but a series of bounded instabilities that walks, talks, and has a name. And woe betide that center point in our personalities, that “phantom fourth” that acts as our “I” when we talk to ourselves. We’re the tiny planet at the center of a mayhem of tidal forces. Just one of those triads is strong enough to pull us apart. And we deal with all of them in some way every moment we’re alive.
The fact is, we’re all about to fly apart. It’s just that many of us do a pretty good job of hiding it.
I keep hoping that there’s some solid ground here, either in myself or in others, but there’s not. There’s only a little bit of the Tao Te Ching, the poetic basis for much of Eastern mysticism:
Thirty spokes are joined together in a wheel,
but it is the center hole
that allows the wheel to function.
We mold clay into a pot,
but it is the emptiness inside
that makes the vessel useful.
We fashion wood for a house,
but it is the emptiness inside
that makes it livable.
We work with the substantial,
but the emptiness is what we use.
Lao Zu, Tao Te Ching 11
As the triads that make up my life spin wildly through the dark—as more and more of the mental and physical characteristics that I have thought of as me get pulled apart by the tidal forces of my life—I am remembering to take my attention off the three-body problem. I am remembering to ignore those massive forces as they fly by. Because yes, I’m the tiny planet being pulled apart at the center. But I’m also the emptiness that exists even when the planet is gone. What’s getting pulled apart is just the spokes of my wheel, the sides of my vessel, the wood for my house. The phantom fourth will continue to exist even if there’s no planet there at the center. The triads will keep spinning. They’re a bounded instability, after all.
Even in my bitterness, I can be grateful for what I have yet to lose. Because when all is lost, what’s left is the emptiness that I use.