I saw this meme come across my Facebook earlier.
The person posting it intended it as a simple “fit-spiration” image, and based on the comments, does seem to have fit-spired a few people. I’ve also seen a version where the warrior replies to “fate” instead of the devil, so it’s not necessarily associated with any particular theology. It’s totally fine to get inspiration from badass quotes and badass lions. Go get it and all that.
But there’s a cross superimposed on that lion, which makes this image an explicitly Christian one, and it’s that association I want to analyze. Consider it an exercise in taking random Internet memes way too seriously.
It’s fair to say that when you see a lion and a cross together in an image, the reader is intended to call Jesus to mind. So we’ve got a lion, a cross, and the following text:
The devil whispers, “You cannot withstand the storm.” The warrior replies, “I am the storm.”
First, how is Jesus even relevant here? It’s the warrior who has overcome the devil by being the very storm with which she’s been threatened. The warrior can handle herself just fine, thank you. All the Jesus imagery doesn’t really seem necessary.
This in itself is bad Christian theology.
Sure, sure, our warrior says, I need the grace of God or whatever, but he’s blessed me enough for now. Jesus can sit this one out. After all, thanks-be-to-God, I am the storm. If you can’t overcome temptation, clearly you just haven’t been blessed by Jesus with enough storminess.
In traditional Christian teaching, we overcome the evil triad of sin, death, and the devil only through the grace of God and the work of Christ. A mighty fortress is our God, a bulwark never failing! Martin Luther believed so strongly in the strength of God’s grace that he would routinely shout “I am baptized!” into the darkness when he felt temptation. “Sin!”, said Luther, “Devil! I am baptized, so you have no claim on me.”
The creator of this meme, by calling Jesus to mind and pairing him with the warrior quotation, is explicitly rejecting this tradition.
As an alternative, perhaps the author intended to say that Jesus was the warrior overcoming the devil. The fit-spired person is taking on the strength of Christ to do his workout and overcome the temptation to be lazy. But that, too, derives from the very same bad theology.
Christian teaching is clear that Jesus did not overcome the devil by his superior strength, as though the two had an arm-wrestling match and Jesus had the bigger biceps. Luther called that idea the theology of glory: God is found most prominently in his strength, his wisdom, his majesty, and his power. If you’re looking for God, you need to look for power and wisdom and majesty, and that’s where he’ll be. And once you find him, it teaches, those things rub off. You’re on the right track if your own power, strength, wisdom, and majesty are increasing.
Theology of glory is sort of humanity’s default, and requires constant vigilance to counter it. If you aren’t constantly holding something else in your mind, you will naturally fall into a theology of glory. It just makes that much sense. (The prosperity gospel is sort of the theology of glory taken up to 11.)
Luther contrasted it with his theology of the cross. The paradox and mystery of the cross is that the power of God is revealed in weakness, in his voluntary shedding of power, in God being torn in two and consumed by death and consuming death from the inside. It wasn’t as the glorious omnipotent King of Kings, but as the beaten, bloody Son of Man that God conquered sin.
The theology of the cross teaches that God’s glory does not look like the power and majesty of an earthly king magnified to infinity. God’s strength does not look like a bodybuilder (or maybe a wizard) magnified to infinity. The weakness of the incarnation – God as a baby – and the cross – God dying – are the lenses through which we must review and correct the very concepts of power and strength.
This God who works best through weakness meets us in our own frailty and it’s there, in our darkest parts, that he binds us up and saves us.
You can scarcely read a page of the New Testament without coming across the theology of the cross: God has cast down the rulers from their thrones. The last will be first, and the first will be last. If anyone would rule among you, he must be a servant to all.
Blessed are the meek, the hungry, the poor, the peacemakers.
Take up your cross, and follow me.
The warrior is not the storm. In fact, it kills him.
Or, the dangers associated with trusting medical information you find on the Internet, part two.
After I got through the initial shock of the horror list and focused my efforts on reliable-looking information, I encountered another problem with medical information on the Internet. I found a site called Medical Disability Guidelines, which appears to be a one-stop resource for physicians and patients regarding disability claims for various illnesses.
They’ve got a page on syringomyelia, which includes the following:
Approximately 50% of individuals over the course of many years do not experience any worsening of their disease (Al-Shatoury). The other half, although relieved of some pain, eventually become wheelchair-bound. Delay in treatment may result in irreversible spinal cord injury. About one-fifth of individuals with syringomyelia die at an average age of 47 (Al-Shatoury).
One-fifth die at 47? Half end up in wheelchairs? Oh crap. Oh my God. I don’t want to end up in a wheelchair! I don’t want to die in 17 years!
Wait, my wife taught me to check for a citation, as in the case of the horror list. Oh crap. This one has a citation. They cite Hassan Ahmed Hassan Al-Shatoury, who appears after some Google searching to be an Egyptian neurosurgeon. That sounds legit.
But what does that even mean? The 20% of patients with the worst outcomes will die an average age of 47? You could say that of virtually anything! What about the 80% of patients who don’t experience the worst outcome? Do they live normal lifespans? Inquiring and desperate minds want to know! Nobody seems compelled to publish these things.
But wait! There’s more! Medical Disability Guidelines isn’t even citing the most recent research!
On Medscape, a resource for physicians, Al-Shatoury himself (!) writes the following:
Although older studies had suggested that 20% of patients died at an average age of 47 years, mortality rates are likely lower in today’s patients as a result of surgical interventions and better treatment of complications associated with significant paresis, such as pulmonary embolism.
There Al-Shatoury cites an enormously encouraging paper indicating that only 30% of people with fairly advanced syringomyelia have any significant muscular weakness, and a full third don’t have any significant numbness or pain. Unfortunately, you need fancypants subscribe access to see it, so I can’t link to it here.
Take my advice. Wait for somebody qualified to interpret the medical literature to tell you what’s going on, because you probably aren’t a neurologist, and you’re just going to panic.
An update on my symptoms, first:
- I’m going back to physical therapy for my shoulder and back muscle spasms, which are almost certainly caused at least partly by the syrinx. (My hypothesis is that the syrinx damage is causing a specific muscle – I suspect my right upper traps – to spasm, which is cascading and causing all of the other nearby muscles to spasm. But I’ve learned not to self-diagnose in the past month or two, so it will indefinitely remain a hypothesis.)
- Gabapentin has dramatically reduced my nerve pain, and I don’t seem to have any of the loopier side effects the drug sometimes causes. I’m a bit dizzy sometimes, but that’s really about it. Some people get side effects so strongly that they discontinue the drug, but as I’m prone to psychosomatic problems (“The drug causes pain in the left foot? OH GOD MY LEFT FOOT HURTS!”), I don’t want to hear about them. I got lucky here.
- Thanks to the drug, for the first time in about ten years, I’m not consistently aware of my right arm in the back of my mind, because my fingers and wrists aren’t tingling, throbbing, or twitching. It’s weird. I feel like something is missing.
- Gabapentin is also an anti-anxiety drug, which I’m taking in combination with another. Without the anxiety, at first, I was bored. What do people do when they aren’t fretting all the time? Now that I’m used to it, I’m also substantially happier. I never realized how much the anxiety was affecting other aspects of my life. (I come by it honestly: several immediate family members also have occasionally-severe anxiety.)
And now the main point.
I found a PDF on a neurosurgery resident website containing some medically objective, helpful notes about syringomyelia. It includes a series of example MRI images illustrating how variable syrinxes can be in different people. It’s called “Viktor’s Notes”. Viktor appears to be Viktoras Palys, a neurosurgeon at Virginia Commonwealth University.
Some useful facts:
- Only 10% of syrinxes extend above the C2 vertebra into the brainstem.
- If your syrinx doesn’t extend beyond the central canal (like mine), it’s technically called hydromyelia, but that term is more commonly used for congenital spine problems in children. This doesn’t exempt sufferers from problems, because the pressure still damages nerve fibers. However, a cavity that’s escaped the central canal is substantially more damaging.
- Syrinxes tend to start in the posterior horn, which is apparently responsible for communicating light touch, pain, and temperature sensations to the thalamus for processing.
- Posterior horn damage causes deep, aching chronic pain in 30% of patients.
- If the syrinx progresses to the anterior horn, that’s when you’ll get your hand weakness, spastic leg movements, etc.
And finally, a “fun” fact!
Muscle spasms can cause pain. Muscle spasms can also be caused by pain. This can result in a pain-spasm-pain cycle, where a muscle spasms for unrelated reasons, and then stays tight because the previous spasm hurt. Taking a couple of Tylenol can end the pain and relax the muscle. Similarly, a drug that forces the muscle to relax can end the pain. Problems with multiple solutions are great.
Today, I had my followup appointment at the neurologist after the contrast MRI. I got to see pictures of my syrinx, and it’s … actually quite small! You can see it there in the photo on the right, sitting right in the middle of my C5 vertebra. It doesn’t extend more than a centimeter or so. It’s like somebody took a Tylenol gelcap and stuck it down the middle of my spinal cord. Other people have syrinxes extending from their brainstem to halfway down their back, so I got super lucky.
The neurologist says there’s no clear cause. I definitely do not have Chiari malformation. I definitely do not have a tumor. I probably don’t have any other sort of blockage. It just sort of happened. He says that it might be new, or it might have been there since I was an infant, and there’s no good way to tell. I might need surgery someday, or I might only need a periodic MRI for follow-up every year or so.
He says that I have only common-sense sorts of restrictions: no powerlifting, no trampolines, no car accidents. I can lift, run, swim, or anything else, as long as it doesn’t make my symptoms worse.
Importantly, I can do photography: the weight of the camera around my neck shouldn’t be more damaging to my spinal cord than a 15 lb camera around anybody else’s neck.
I also got drugs for the nerve pain, which are supposed to be pretty effective, so that should help a lot with the muscle spasms.
This is an enormous weight lifted from my shoulders. I’ve been terrified for the past month, with visions of wheelchairs, walkers, and canes floating in my dreams. I feel like I’ve been granted at least a temporary reprieve.
I got the call from the neurologist: “You’ve got a syrinx!” he said. He even spelled it for me. On the phone, I was inappropriately cheerful after finding out, after a decade of thinking I had some bizarre ergonomic problem that nobody else has ever had, that my condition has a name. I thanked him profusely. He probably ended the call feeling a bit baffled about what just happened.
I came down from the it-has-a-name!-induced high pretty quickly once I hit the Google for information. I searched for “syrinx” and learned that the actual name of the condition is syringomyelia, while the cyst itself is a syrinx. I learned that it’s associated, most of the time (but not in my case, probably) with another condition called the Chiari malformation. Like 85% of the time. The association is strong enough that the various support websites are all (except one) Chiari-and-Syringomyelia foundations.
And on one of those websites, I found The Horror List.
And then I found it again, on a syringomyelia-only support group website.
Oh my God, I thought. I have to avoid everything!
Here are some items from the list:
- No neck-stressing activities, from rollercoasters to high-impact sports to reading a book in your lap to falling asleep in chairs!
- No lifting more weight than a gallon of milk!
- No straining to reach anything! No straining when constipated!
- No coughing!
- No pushing, pulling, or otherwise manipulating furniture!
- No bending over! Sit up straight! Don’t let your neck bend backward unsupported! Don’t “sleep in a head down position”!
- Avoid salty food!
- Don’t do anything that might involve falling down or getting hurt in any way!
- Don’t go to a chiropractor!
- No massages!
Sit in your comfortable chair. Stare at the TV! That’s the only thing you can do that’s safe! – but don’t fall asleep, because that’s dangerous too!
I panicked. Flat out panicked.
I tried to think of something I enjoy doing that wouldn’t be banned by the list, and came up with nothing. And then, since the list also included “Try to relax, avoid noise and keep your neck muscles relaxed”, I panicked about panicking.
Wracked with sobs, I showed my wife, who, as a medical person, interacts with medical advice on a daily basis.
She was suspicious.
She pointed out the numerous spelling errors (one version uses “ur” for “your”), the poor grammar, the strange inconsistencies, the complete lack of citations. Can you not lift anything heavier than a gallon of milk, she wondered, or should you limit your strength training to 15 lbs? The list contains both. Should you avoid doing things where you might fall, or can you go backpacking? Should you avoid a chiropractor, or is it okay if your chiropractor is familiar with syringomyelia? Where are the sources? Who wrote this list? How do we know we can trust them?
Fortunately, her common sense prevailed.
A quoted Google Search for an item in the horror list shows only six relevant results, none of them legitimate medical resources. The list has no sources, and it doesn’t seem to be corroborated by anything. People have been copying and pasting it around the Internet since at least 2010. It even shows up in a few spam messages on hacked websites!
I found the Mayo Clinic’s list of “home remedies”, which includes things you should probably avoid. I’m going to reproduce it in full here.
If you’ve been diagnosed with syringomyelia, avoid any activity that involves heavy lifting, straining or putting excessive force on your spine. Examples of activities to avoid include:
- Playing high-impact sports, such as football and Rugby
- Riding roller coasters
- Sky diving
- Straining during a bowel movement
- Excessive coughing (talk to your doctor about treatment if coughing persists)
You should avoid doing things that subject your head (and therefore syrinx) to sudden acceleration, like getting tackled. You should avoid doing things that induce a Valsalva reflex, which includes: lifting something heavy while holding your breath, straining to poop, and excessive coughing. Against the Horror List, they specifically recommend going to Physical Therapy (yay!) for exercise and passive manipulation, especially if you have pain or weakness.
Obviously, avoid doing things that make your symptoms worse, but otherwise, don’t panic. Not all of your aches and pains are related to your syrinx. They weren’t before, and they aren’t now that you know it exists. Even if it makes sense that they might be. You still have a whole body that can ache and cramp and spasm all on its own.
So, unless somebody turns up with a journal article corroborating the items in the Horror List, well, try to ignore it.
It’s probably a bunch of hooey.
(P.S. If you are the owner of syringomyelia.ca, and you happen to come across this post, please consider replacing your “handicapped access wheelchair guy” menu icons with something a little bit more hopeful. It’s a little bit like going to the American Cancer Society website, having just learned that you’ve got prostate cancer, and finding that all of the menu icons are photographs of human skulls.)
I’ve always told people it was carpal tunnel syndrome.
I’m a computer programmer and an avid computer user at home. I spend a lot of time texting and IMing friends, writing code, playing video games. Nerve conduction tests have shown both ulnar and median nerve compression, mostly at my elbow. Excessive use of my devices definitely makes the pain worse. Use of a keyboard without a tray makes it worse. Sitting and typing in the wrong chair makes it worse. Lifting weights makes it worse (sometimes).
It comes and goes – some days it’s fine. Other days it hurts like hell. On the hell days, something odd would happen. I’ve described it repeatedly as “feeling swollen”, like my whole body was reacting to the pain in my wrists, and refusing to cooperate. I probably wouldn’t have been weaker in an objective test of strength, but everything just felt harder, like my muscles just weren’t receiving the commands to stand up and walk or grab on to that wine glass and don’t drop it. (Sorry.) And because of that (lupus! fibromyalgia! chronic fatigue! multiple sclerosis!), I’ve had six MRIs in my lifetime. Nada. Nothing. Take your Vitamin D. It’s probably stress.
And so there I was, just a guy with severe, mysterious ergonomic problems. That was my story. Avoid lifting when my wrists were bad. Don’t help your friends move their sleeper sofas or pianos. Take lots of Advil. Keep your Vitamin D up. Periodically wear a wrist brace. By this year, it had been a decade since my first issues, so while it was mildly depressing, I was pretty accustomed to it.
And then I hurt my shoulder.
I had just started a new job with poor ergonomics. The chair was awful. They hadn’t installed the keyboard tray and nobody seemed to know who to contact to have it installed. I didn’t have an ergonomic keyboard for a couple weeks, or an ergonomic mouse for a while past that. I was in pretty much constant pain all the time. I was ready to quit.
And then I got the call: my grandfather had passed away. I took a couple of days off to drive down to the funeral in my new car – the first long drive in the new vehicle. With the new-job induced wrist pains, I basically had to hold my arm up at the shoulder for five hours. When I arrived, my neck was stiff, like I had slept on both sides funny for six weeks straight. I could barely turn my head from side to side. I had to lift a casket. And then I had to drive five hours back home.
From that day onward, I couldn’t lift my right arm above my shoulder without severe pain, muscle spasms, and numbness.
The physical therapist figured it was a pinched nerve at my neck, thoracic outlet syndrome. Lots of rubbing, manipulating, heat, electrical stimulation, and eventually steroid treatments. All of them would help temporarily, and then the muscles would spasm and everything would tighten right back up again.
After 8 months of that, she sent me for another MRI: turns out my shoulder was fine. She sent me to an orthopedist to look for a structural problem. My strength was fine. No structural problems. The orthopedist sent me to a neurologist, who poked me with a pin in various places, diagnosed me with a “skin sensation disturbance” and sent me for a neck MRI.
And there it was.
“The MRI showed something,” the neurologist told me on the phone. “You’ve got something called a syrinx.” A rare condition, he explained, something that only a few thousand people have. Only long-term treatment is surgery, and even that’s been a bit shaky.
The condition is the tongue-twisting syringomyelia, usually helpfully abbreviated SM.
So I did what you’re never supposed to do upon hearing that you’ve got a rare, potentially serious condition: I googled it. Oops. Fortunately, my wife the medical professional was able to supply me with more accurate, more up-to-date information to counter virtually every tale of gloom and doom online. I feel better about it. Sometimes. Sometimes I cry for no reason. I wish I hadn’t googled it, but that ship has sailed.
This series of blog posts will help me work out the emotions, lifestyle changes, and general medical nonsense associated with this condition. If I’m going to be stuck with something like this, I want to offer hope to somebody else with the condition. I want to gently nudge people in the right direction for recent, high-quality information. And I want to keep other people with SM posted about my treatment results. Overall, I don’t want anybody else to spend their time between appointments with the hopeless dread that I felt.
So, in conclusion, hello!
This is a Big Deal for physicists!
This article explains it best in semi-technical terms. Or watch this YouTube video by the folks at PhD Comics for a cartoon-y take on it!
Congratulations to all involved at CERN and elsewhere!