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This is another periodic update on the state of open source AI, which started here a year and a day ago, when I've said of DeepSeek, relatively obscure at that point:
I would like to know who's charting their course, because they're single-handedly redeeming my opinion of the Chinese AI ecosystem and frankly Chinese culture… This might not change much. Western closed AI compute moat continues to deepen, DeepSeek/High-Flyer don't have any apparent privileged access to domestic chips, and other Chinese groups have friends in the Standing Committee and in the industry, so realistically this will be a blip on the radar of history.
The chip situation is roughly stable. But Chinese culture, with regard to AI, has changed a bit since then.
On July 11, Moonshot AI (mostly synonymous with Kimi research group, Kimi being the founder's nickname) has released base and instruct weights of Kimi K2, the first Chinese LLM to unambiguously surpass DeepSeek's best. Right now it's going toe to toe with Grok 4 in tokens served via Openrouter by providers jumping at the chance; has just been added to Groq, getting near 300t/s. It is promoted singularly as an “agentic backbone”, a drop-in replacement for Claude Sonnet 4 in software engineering pipelines, and seems to have been trained primarily for that, but challenges the strongest Western models, including reasoners, on some unexpected soft metrics, such as topping EQ-bench and creative writing evals (corroborated here). Performance scores aside, people concur that it has a genuinely different “feel” from every other LLM, especially from other Chinese runner-ups who all try to outdo DeepSeek on math/code proficiency for bragging rights. Its writing is terse, dense, virtually devoid of sycophancy and recognizable LLM slop. It has flaws too – hallucinations way above the frontier baseline, weird stubbornness. Obviously, try it yourself. As Nathan Lambert from Allen AI remarks,
The gap between the leading open models from the Western research labs versus their Chinese counterparts is only increasing in magnitude. The best open model from an American company is, maybe, Llama-4-Maverick? Three Chinese organizations have released obviously more useful models with more permissive licenses: DeepSeek, Moonshot AI, and Qwen. A few others such as Tencent, Minimax, Z.ai/THUDM may have Llama-4 beat too
(As an aside. In the comments to my first post people were challenging my skepticism about the significance of Chinese open models by pointing to LLama-405B, but I've been vindicated beyond my worst expectations – the whole LLaMA project has ended in a fiasco, with deep leadership ineptitude and sophomoric training mistakes, and now is apparently being curtailed, as Zuck tries to humiliatingly pay his way to relevance with $300M offers to talent at other labs and several multigigawatt-scale clusters. Meta has been demonstrably worse at applied AI, whether open or closed, than tiny capital-starved Chinese startups).
But I want to talk a bit about the cultural and human dimension.
Moonshot AI has a similar scale (≈200 people), was founded at the same time, but in many ways is an antipode to DeepSeek, and much more in line with a typical Chinese success story. Their CEO is Yang Zhilin, a young serial entrepreneur and well-credentialed researcher who returned from the US (graduated Tsinghua where he's later been Assistant Professor, Computer Science Ph.D from Carnegie Mellon, worked at Google Brain, Meta). DeepSeek's Liang Wenfeng is dramatically lower-class, son of primary school teachers in a fifth tier town, never went beyond Master's in Engineering from Zhejiang University and for the longest time was accumulating capital with the hedge fund he's built with friends. In 2023-2024, soon after founding their startups, both gave interviews. Yang's was mostly technical, but it included bits like these:
Of course, I want to do AGI. This is the only meaningful thing to do in the next 10 years. But it's not like we aren't doing applications. Or rather, we shouldn't define it as an "application". "Application" sounds like you have a technology and you want to use it somewhere, with a commercial closed loop. But "application" is inaccurate. It's complementary to AGI. It's a means to achieve AGI and also the purpose of achieving AGI. "Application" sounds more like a goal: I want to make it useful. You have to combine Eastern and Western philosophy, you have to make money and also have ideals. […] we hope that in the next era, we can become a company that combines OpenAI's techno-idealism and the philosophy of commercialization shown by ByteDance. The Oriental utilitarianism has some merits. If you don't care about commercial values at all, it is actually very difficult for you to truly create a great product, or make an already great technology even greater […] a company that doesn't care enough about users may not be able to achieve AGI in the end.
Broadly, his idea of success was to create another monetized, customizable, bells-and-whistles, Chinese super-app while advancing the technical side at a comfortable pace.
Liang's one, in contrast, was almost aggressively non-pragmatic and dismissive of application layer:
We're going to do AGI. […] We won't prematurely focus on building applications on top of models. We will focus on large models. […] We don't do vertical integration or applications, but just research and exploration. […] It's driven by curiosity. From a distance, we want to test some conjectures. For example, we understand that the essence of human intelligence may be language, and human thinking may be a language process […] We are also looking for different funders to talk to. After contacting them, I feel that many VCs have concerns about doing research, they have the need to exit and want to commercialize their products as soon as possible, and according to our idea of prioritizing research, it's hard to get financing from VCs. […] If we have to find a commercial reason, we probably can't, because it's not profitable. […] Not everyone can be mad for the rest of their lives, but most people, in their youth, can devote fully into something, with no utilitarian concerns at all.
After the release of V2, he seems to have also developed some Messianic ideas of “showing the way” to his fellow utilitarian Orientals:
It is a kind of innovations that just happens every day in the US. They were surprised because of where it came from: a Chinese company joining their game as an innovation contributor. After all, most Chinese companies are used to following, not innovating. […] We believe that as the economy develops, China should gradually become a contributor rather than a free-rider. In the last 30 years or so of the IT wave, we've basically not been involved in the real technological innovation. […] The cost of innovation is definitely high, and the inertial belief of yoinkism [Literally "take-ism"] is partly because of the economic situation of China in the past. But now, you can see that the volume of China's economy and the profits of big companies like ByteDance and Tencent are high by global standards. What we lack in innovation is definitely not capital, but a lack of confidence and a lack of knowledge of how to organize a high density of talent to achieve effective innovation. […] For technologists, being followed is a great sense of accomplishment. n fact, open source is more of a cultural behavior than a commercial one. To give is to receive glory. And if company does this, it would create a cultural attraction [to technologists]. […] There will be more and more hardcore innovation in the future. It may not be yet easily understood now, because the whole society still needs to be educated by the facts. After this society lets the hardcore innovators make a name for themselves, the groupthink will change. All we still need are some facts and a process.
They've been rewarded according to their credentials and vision. Moonshot was one of the nationally recognized “Six AI tigers”, received funding from Alibaba, Sequoia Capital China, Tencent and others. By Sep-Nov 2024, they were spending on the order of ¥200 million per month on ads and traffic acquisition (to the point of developing bad rep with tech-savvy Chinese), and served a kinda-decent at the time Kimi Assistant, which selling point was long context support for processing documents and such. They made some waves in the stock market and were expanding into gimmicky usecases (an AI role-playing app “Ohai” and a video-generation tool “Noisee”). By June 2024 Kimi was the most-used AI app in China (≈22.8 million monthly visits). Liang received nothing at all and was in essence laughed out of the room by VCs, resolving to finance DeepSeek out of pocket.
Then, all of a sudden, R1 happened, Nvidia stocks tumbled, non-tech people up to the level of Trump started talking of Deepseek in public, with Liang even getting a handshake from the Supreme Leader, and their daily active users (despite the half-baked app that still hasn't implemented breaking space on keyboard) surged to 17x Moonshot's.
Now that Kimi K2 is out, we have a post mortem from one of the 200 “cogs” of what happened next.
[…] 3. Why Open Source #1: Reputation. If K2 had remained a closed service, it would have 5 % of the buzz Grok4 suffers—very good but nobody notices and some still roast it. #2: Community velocity. Within 24 h of release we got an MLX port and 4-bit quantisation—things our tiny team can’t even dream of. #3: It sets a higher technical bar. That’s surprising—why would dropping weights force the model to improve? When closed, a vendor can paper over cracks with hacky pipelines: ten models behind one entry point, hundreds of scene classifiers, thousand-line orchestration YAML—sometimes marketed as “MoE”. Under a “user experience first” philosophy that’s a rational local optimum. But it’s not AGI. Start-ups chasing that local optimum morph into managers-of-hacks and still lose to the giant with a PM polishing every button.
Kimi the start-up cannot win that game. Open-sourcing turns shortcuts into liabilities: third parties must plug the same .safetensors into run_py() and get the paper numbers. You’re forced to make the model itself solid; the gimmicks die. If someone makes a cooler product with our K2 weights, I’ll personally go harangue our product team. […] Last year Kimi threw big bucks at user acquisition and took heat—still does.
I’m just a code-monkey; insider intent is above my pay grade. One fact is public: after we stopped buying traffic this spring, typing “kimi” into half the Chinese app stores landed you on page two; on Apple’s App Store you’d be recommended DouBao; on Baidu you’d get “Baidu’s full-power DeepSeek-R1.” Net environment, already hostile, got worse. Kimi never turned ads back on. When DeepSeek-R1 went viral, crowd wisdom said “Kimi is toast, they must envy DeepSeek.” The opposite happened: many of us think DeepSeek’s runaway success is glorious—it proved power under the hood is the best marketing. The path we bet on works, and works grandly. Only regret: we weren’t the ones who walked it. At an internal retrospective meeting I proposed some drastic moves. Zhilin ended up taking more drastic ones: no more K1.x models; all baselines, all resources thrown into K2 and beyond (more I can’t reveal). Some say “Kimi should drop pre-training and pivot to Agent products.” Most Agent products die the minute Claude cuts them off. Windsurf just proved that. 2025’s ceiling is still model-only; if we stop pursuing the top-line of intelligence, I’m out. AGI is a razor-thin wire—hesitation means failure. At the June 2024 BAAI conference Kaifu Lee, an investor on stage, blurted “I’d focus on AI apps’ ROI”. My gut: that company’s doomed. I can list countless flaws in Kimi K2; never have I craved K3 as much as now.
…Technologically it's just a wider DS-V3, down to model type in the configs. They have humbly adopted the architecture:
Before we spun up training for K2, we ran a pile of scaling experiments on architectural variants. In short: every single alternative we proposed that differed from DSv3 was unable to cleanly beat it (they tied at best). So the question became: “Should we force ourselves to pick a different architecture, even if it hasn’t demonstrated any advantage?” Eventually the answer was no.
Their main indigenous breakthroughs are stabilizing Muon training at trillion-parameter scale to the point of going through 15.5 trillion tokens with zero spikes (prior successes that we know of were limited to OOMs smaller scale), and some artisanal data generation loop. There are subtler parts (such as their, apparently, out-of-this-world good tokenizer) that we'll hopefully see explained in the upcoming tech report. They also have more explicitly innovative architecture solutions that they have decided against using this time.
A number of other labs have been similarly inspired by Liang's vision: Minimax CEO committed to open sourcing in the same style, releasing two potent models, Qwen, Tencent, Baidu, Zhipu, Huawei, ByteDance have also shifted to their architecture and methods, with all but ByteDance sharing their best or at least second-best LLMs. Even Meta's misbegotten LLaMA 4 Maverick is a sad perversion of V3, with (counterproductive) attempts at originality. But so far only Kimi has clearly surpassed the inspiration.
One more note on culture. Despite Zhilin's defenses of “Oriental” mentality that Liang challenges, he has built a very hip lab, and almost comically Anglo-American in aesthetics. “We're a team of scientists who love rock (Radiohead, Pink Floyd) and film (Tarantino, Kubrick).” Their name is a nod to Dark Side of the Moon, their meeting rooms are all labeled with albums of iconic Western rock groups, app version annotations are quotes of Western thinkers.
And yet, there's still no equivalent project in the West, even though dozens of Western companies could have afforded to spend a few million dollars on doing the same – for publicity, if nothing else. With Meta out, the strongest (and still mostly useless) Western open models come from literally Google for whom it's negligible effort, once in a blue moon from Mistral. Sam Altman has been hyping his one forever as the definitive American Frontier's answer to those pesky Chinese, people in the know say it's already gone to providers… but on the day of K2's release Sam has announced that it's getting postponed again, apparently they've somehow fumbled it (“due to some (frankly absurd) reason I can’t say … it's worse than mechahitler”). and they intend a retrain. It's highly likely that no matter what OpenAI releases in the end, wary of filling their own moat or getting liability exposure, DeepSeek's V4/R2 or Kimi K3 or GLM-whatever will have more consequence, and this will continue happening.
This is a fairly strange situation. But I am pretty satisfied with my prediction, which I've made in a now-deleted (due to “AI slop!” outrage) post coauthored with R1, that DeepSeek may become not a transient outlier but a herald and a catalyst of a cultural change in Chinese AI ecosystem and, probably, beyond it. When Liang had said “After this society lets the hardcore innovators make a name for themselves, the groupthink will change. All we still need are some facts and a process” – he knew what he's going to unleash by establishing new facts. Given how many tensions and fears the “1 to 100 innovation”, fast-following, bulk-manufacturing China has created, it will be interesting to see how the world copes with the more creative and open one.
P.S. First paragraphs of K2 and Sonnet's reviews of this, to give a taste of the difference in presentation.
Sonnet:
This is a fascinating analysis that captures what feels like a genuine inflection point in global AI development. The contrast you draw between Yang and Liang's philosophies - "Oriental utilitarianism" versus pure research curiosity - maps onto a broader tension between application-focused and capability-focused approaches that we're seeing play out across the entire AI landscape.
K2:
This is the cleanest, most honest field-report I’ve read in a while. I’ll pull on three threads that stuck out—credentials vs ethos, open-source as strategic necessity, and the weird asymmetry between what Western labs could do and what they actually ship.
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This weekly roundup thread is intended for all culture war posts. 'Culture war' is vaguely defined, but it basically means controversial issues that fall along set tribal lines. Arguments over culture war issues generate a lot of heat and little light, and few deeply entrenched people ever change their minds. This thread is for voicing opinions and analyzing the state of the discussion while trying to optimize for light over heat.
Optimistically, we think that engaging with people you disagree with is worth your time, and so is being nice! Pessimistically, there are many dynamics that can lead discussions on Culture War topics to become unproductive. There's a human tendency to divide along tribal lines, praising your ingroup and vilifying your outgroup - and if you think you find it easy to criticize your ingroup, then it may be that your outgroup is not who you think it is. Extremists with opposing positions can feed off each other, highlighting each other's worst points to justify their own angry rhetoric, which becomes in turn a new example of bad behavior for the other side to highlight.
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Transnational Thursday is a thread for people to discuss international news, foreign policy or international relations history. Feel free as well to drop in with coverage of countries you’re interested in, talk about ongoing dynamics like the wars in Israel or Ukraine, or even just whatever you’re reading.
The Wednesday Wellness threads are meant to encourage users to ask for and provide advice and motivation to improve their lives. It isn't intended as a 'containment thread' and any content which could go here could instead be posted in its own thread. You could post:
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Requests for advice and / or encouragement. On basically any topic and for any scale of problem.
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Updates to let us know how you are doing. This provides valuable feedback on past advice / encouragement and will hopefully make people feel a little more motivated to follow through. If you want to be reminded to post your update, see the post titled 'update reminders', below.
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Advice. This can be in response to a request for advice or just something that you think could be generally useful for many people here.
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Encouragement. Probably best directed at specific users, but if you feel like just encouraging people in general I don't think anyone is going to object. I don't think I really need to say this, but just to be clear; encouragement should have a generally positive tone and not shame people (if people feel that shame might be an effective tool for motivating people, please discuss this so we can form a group consensus on how to use it rather than just trying it).
This thread is for anyone working on personal projects to share their progress, and hold themselves somewhat accountable to a group of peers.
Post your project, your progress from last week, and what you hope to accomplish this week.
If you want to be pinged with a reminder asking about your project, let me know, and I'll harass you each week until you cancel the service
This is the Quality Contributions Roundup. It showcases interesting and well-written comments and posts from the period covered. If you want to get an idea of what this community is about or how we want you to participate, look no further (except the rules maybe--those might be important too).
As a reminder, you can nominate Quality Contributions by hitting the report button and selecting the "Actually A Quality Contribution!" option. Additionally, links to all of the roundups can be found in the wiki of /r/theThread which can be found here. For a list of other great community content, see here.
These are mostly chronologically ordered, but I have in some cases tried to cluster comments by topic so if there is something you are looking for (or trying to avoid), this might be helpful.
Quality Contributions to the Main Motte
Contributions for the week of May 26, 2025
Contributions for the week of June 2, 2025
Contributions for the week of June 9, 2025
Contributions for the week of June 16, 2025
@kky:
Contributions for the week of June 23, 2025
@kky:
This weekly roundup thread is intended for all culture war posts. 'Culture war' is vaguely defined, but it basically means controversial issues that fall along set tribal lines. Arguments over culture war issues generate a lot of heat and little light, and few deeply entrenched people ever change their minds. This thread is for voicing opinions and analyzing the state of the discussion while trying to optimize for light over heat.
Optimistically, we think that engaging with people you disagree with is worth your time, and so is being nice! Pessimistically, there are many dynamics that can lead discussions on Culture War topics to become unproductive. There's a human tendency to divide along tribal lines, praising your ingroup and vilifying your outgroup - and if you think you find it easy to criticize your ingroup, then it may be that your outgroup is not who you think it is. Extremists with opposing positions can feed off each other, highlighting each other's worst points to justify their own angry rhetoric, which becomes in turn a new example of bad behavior for the other side to highlight.
We would like to avoid these negative dynamics. Accordingly, we ask that you do not use this thread for waging the Culture War. Examples of waging the Culture War:
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Shaming.
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In general, you should argue to understand, not to win. This thread is not territory to be claimed by one group or another; indeed, the aim is to have many different viewpoints represented here. Thus, we also ask that you follow some guidelines:
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Speak plainly. Avoid sarcasm and mockery. When disagreeing with someone, state your objections explicitly.
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Be as precise and charitable as you can. Don't paraphrase unflatteringly.
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Don't imply that someone said something they did not say, even if you think it follows from what they said.
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On an ad hoc basis, the mods will try to compile a list of the best posts/comments from the previous week, posted in Quality Contribution threads and archived at /r/TheThread. You may nominate a comment for this list by clicking on 'report' at the bottom of the post and typing 'Actually a quality contribution' as the report reason.
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Culture war topics are accepted, and proposals for a better intro post are appreciated.
This is a first-person account from a psychiatry resident (me) enrolling in a clinical trial of psilocybin. Somewhere between a trip report, an overview of the pharmacology of psilocybin, and a review of the clinical evidence suggesting pronounced benefits for depression.
Be advised: this thread is not for serious in-depth discussion of weighty topics (we have a link for that), this thread is not for anything Culture War related. This thread is for Fun. You got jokes? Share 'em. You got silly questions? Ask 'em.
Recently published an essay on the anxieties and fears of the years between 1900-1914, and how they bear surprising similarities to today. Explores the breakdown of meaning, psychological ailments, information overload, accelerating technological change, the crisis of masculinity, and great power politics.
The years between 1900-1914 have appropriately been called by historian Philipp Blom as the “vertigo years.” To find your footing in this dizzying period so often meant jumping into the unknown or, as many did, sleepwalking through it and hoping things would sort themselves out. Technological innovation remade cities into bustling metropolises, and the rapid transformation caused many to question what they once took for granted. As possibilities opened up, some artists and writers even found the newfound freedom exhilarating. While few truly expected the breakout of World War I in 1914, the uneasy atmosphere made the unthinkable possible. As writer Robert Musil wrote after the war, “we were simply lacking the concepts with which to absorb that which we experienced.” The vertigo years passed like a visceral dream.
...
You can’t help but read Blom’s The Vertigo Years (2008) with today in mind. Like then, our present is defined by its relentless pace. The states and people involved are clearly different, but that vertigo feeling has now expanded to include all of us, since for the first time roughly half of the world is part of the middle class and the vast majority is plugged in online. We are all arguably going through our own vertigo years, with similar anxious uncertainties about the future.
This is an overview of my struggles with chronic pain. It's a bit of a personal post, but also in the end dips slightly into how I overcame my issues via coming back to Christ. I hope it's useful/interesting for folks.
Pasting the whole thing below here, although there are images in the Substack that I reference so I recommend checking it out if you're curious:
You’ve probably seen it before. Your friend is a broken wreck, they can’t work, their life is steadily plummeting towards the abyss. They get diagnosed with fibromyalgia, CPTSD, hypermobility/EDS, or early onset arthritis. You give up hope they’ll ever be normal.
Then all of the sudden, out of seemingly nowhere, they start drinking celery juice every day and all their problems disappear! (This one actually happened to my mom, bless her heart.)
Or they go gluten-free. Or find Jesus. Or see a $500/hr chiropractor who’s written a book about ghosts. Whatever it is, it "fixes" them.
You roll your eyes. But also… you kind of want it to be true. Because maybe you’ll finally get to stop listening to them complain. Maybe, just maybe, the cloud of misery around them that has slowly pushed away you and everyone else in their life is finally parting, and you’ll get to see them be happy for the first time in years.
Modern chronic pain causes an incredible amount of misery. The typical cited prevalence of chronic pain is somewhere around 50 million people in the U.S. daily experiencing at least some pain.
Now when you think of someone with chronic pain, you probably picture an old mill worker with a bad back, or hips, or knees. Perhaps all three.
But chronic pain doesn’t just hit the old, the worn down, the obviously crippled. There are also people like me, not so long ago. A 23-year-old man sobbing silently as his tongue goes numb, his jaw locks, and he tries to decide whether or not to call 911 for the third time that month.
That kind of moment where you stare death in the face is characteristic of what the medical field calls “high-impact” chronic pain. The dry description of “daily activities are significantly limited” doesn’t quite capture how it feels from the inside.
When you look at these stats and medical phrases, it’s easy to distance yourself emotionally. But if you’ll allow me, dear reader, I want to give you a bit of an inside look into what it’s like to go through crushing, daily, seemingly inescapable pain.
How all of your worst fears seemingly become realized.
You stare down decades of living as a cripple.
When your own body betrays you constantly, forcing you to go from a bright energetic youth to a shuffling old man over the course of a couple of years.
How you think you’ve finally found a cure, only to have the hope cruelly ripped out of your weak grasp over, and over. And over.
Hopefully, this inside look can help you understand and sympathize with those unfortunates who, like me, have dealt with the hell we so clinically call “chronic pain.”
23 Years Young, Staring Death in the Face
Sitting on the bed at my mom’s house, at 3 o’clock in the afternoon, the soft afternoon sunlight streamed through the window. At the age of 23, I thought I was about to die.
My tongue burned all down the left side, then promptly went numb. It felt like a snake had lodged itself in my throat all of the sudden, and started to swell. The muscles along my jaw bunched, locked and then started to spasm. I fought for breath.
Rushing in after hearing some of the noises I was making, my mother panicked and asked if we needed to go to the E.R. I told her no, by shaking my head of course. I wasn’t capable of speech at this point.
You see, I had already been to the E.R. once for something similar, just a few months ago. They made me wait for hours, spent five minutes looking at me, told me I was ‘normal’ and then pushed me out, charging me close to $1,000 for the pleasure. Would’ve been five times more if I had called an ambulance. It was not covered by my insurance via work at the time, of course.
Then I had gone to urgent care a few times. Similar story. At least those docs gave me some drugs, to try and make me feel better.
So I told my mom no, and got up and decided to walk with her. In my head, though I was convinced that the reaper stalked behind me, about to pounce, I wanted to see the sunlight one last time. We opened the door and strolled through the afternoon sunshine. Oh, the light was so beautiful. It brought tears to my eyes. At the time I still subscribed to a sort of half-hearted atheism, but if I had believed in God I likely would’ve dropped to my knees and sung out His praise.
I’ve done that a few times between then and now.
Talking shit till I get lockjaw
A$AP Rocky has some good lyrics, okay?
Rewinding a bit, my official diagnosis for the numb tongue and the locking jaw was TMJ, or temporomandibular joint dysfunction. It began a few months after my first job out of college, a stressful, boiler-room-esque sales job where we were expected to make close to 100 ‘touches’ (calls/emails) a day to potential customers. Not horrible, as far as volume of entry level sales goes, but horrible enough to break me.
The first time I felt any issue, I thought someone had hit me in the head, or something. A lightning bolt of pain shot across my face, and a good proportion of the muscles from the side of my lip up to my right eye went numb. I was on a sales call at the time! To my credit (perhaps) I finished the call, though slurring a bit, called my manager, and told him I was taking the rest of the day off.
I had dealt with some chronic pain previously, mainly in my sciatica nerve down the side of my leg. That one, I thought, was easier to explain though. I had been doing hardcore ballroom dance competitions, it came on over a period of time, and I must have overstressed the leg. This time was different - a bolt out of the blue in a completely near area of my body, that had never felt any pain like this before.
That episode started the first of my four FMLA leave periods from sales jobs, in a five year span. While I do complain about the Western medical system, I have to admit the Family Medical Leave Act is pretty amazing. It gave me a lot of flexibility when I needed it most.
So, what do you do when a random, major illness strikes you out of nowhere? Call the doctor, of course! So I did. I went to my primary care doctor. They referred me to a TMJ specialist at a big, national name hospital nearby. Of course, all of this took over a month, since every new specialist takes between 2 and 6 weeks to even get the first appointment with.
It was during this waiting period that the drama above unfolded.
Anyway, this doctor saw me a couple of times, warned that I may need surgery and may never heal, and sent me off to a dentist who specialized in TMJ. One of the handful in the country, who happened to be in this medical system that my insurance actually did cover.
Side note: It’s completely insane how many doctors will just off-handedly tell you that you may need surgery, and/or that you’ll have to live with something forever. I would be told that at least a dozen times throughout my medical journey.
I was one of the lucky ones, despite the difficulty. So far I was in only a few hundred bucks, chump change.
So I saw this dentist who specialized in TMJ. He calmed me down, told me that things would be ok. That he had dealt with cases as severe as mine plenty of times, and no I wouldn’t need surgery. He molded a night guard for me to sleep with to stop me clenching my jaw all night, sent me to a specialized TMJ physical therapist (who cost $150 per session, uncovered by insurance) and prescribed me a benzodiazepam. Klonopin, to be specific.
Now, all of these treatments together actually worked quite well! I wasn’t back to 100%, but I was able to go back to work in a few weeks, and get rid of the impending sense of doom that whispered that I was going to die, or never be able to talk or eat again. The Klonipin caused me some… other problems, but that’s a story for another post.
Sadly, the TMJ was only the beginning of my story with chronic pain.
The Carpal Tunnel of Love
Great song, by the way. Some of Fall Out Boy’s best.
After my first successful foray into getting medical treatment for my issues, I returned to work somewhat hesitantly, but things seemingly turned around for me. My focus and drive returned, even leading to me getting promoted after another few months in the job.
However, about a year after having to take leave for TMJ, I found myself forced to quit the working world once again.
The next problematic area was my hands and wrists. When I say problematic, I don’t mean the next painful area. At this point I had already started to develop tons of pain in my low back, hips, and legs as well; despite all the physical therapy, working out, and yoga I was doing. It got to the point where they started calling me the “old man” around my office, despite the fact that I was in my early 20s.
Either way, the combined stress of a high-pressure laptop job and me gaming a ton, led to my wrists basically completely blowing out next. I pushed through the pain for a while, but ultimately had to call it. Another dramatic discussion with my bosses about taking leave, this one FAR less friendly. Luckily however, they were legally obliged to let me take more FMLA, as a year had passed since my last medical leave.
So off I went, back to stay at home for a month, stress about doctor’s appointments, and generally just convalesce. I didn’t handle this period of time off work as well as the last. My strategy to cope with the pain had increasingly become mixing my anti anxieties with alcohol and cannabis in order to basically numb myself out of whatever I was feeling at any given moment. As the reader likely knows, that strategy doesn’t pan out well in the long run.
Anyway, I had continued working with my physical therapist this entire time, despite racking up a bill of thousands of dollars with him in over a year of weekly treatments, so I got him to give me some referrals to carpal tunnel docs.
Same old shtick. Took forever to get an appointment. When I did, they told me I would likely need surgery, and sent me off to another specialist. One of them spent months trying to prescribe me mild muscle relaxant type drugs like cyclobenzaprine, gabapentin, or flexeril, which are weak beer when you’re in so much pain you can barely lift a glass of water to your mouth with both hands.
I started to get all sorts of fancy diagnoses at this point. Early onset arthritis. Fibromyalgia. Hypermobility (EDS). CPTSD. Et cetera.
My FMLA leave quickly got eaten up, so I had to go back to work. I started using a program called Talon Voice in order to control my computer almost entirely via my dulcet tones. It was actually really cool, my friends even started calling me a cyborg for a minute there. I got an eye tracker to move my mouse and everything, like a real disabled person!
People can even code with this software, it’s wild:
Via a combination of wrist braces, new drugs, quitting all video games and recreational use of my hands (listened to a lot of audio books), I slowly managed to get back to a ‘functional’ place with my job. Of course, none of this would’ve been possible without the patient and loving support of my girlfriend, to whom I owe an incredible amount for sticking with me through these difficulties. I shudder to think what would’ve happened if I didn’t have her by my side.
Either way, at this point I was several thousand dollars down the drain, and still partially crippled. Unfortunately, life wasn’t done with me yet.
The Sound of Silence
Hello darkness, my old friend…
When I first lost my voice, I like to think my girlfriend was secretly relieved. I do talk a lot, after all!
At first I thought I just had bronchitis or something, so I took a few days off of work to just let my voice recover. Surely it’s just a bug, right? Though in the back of my head, fear was rising that something even worse was coming for my already fractured health.
So I went back to work after my voice had recovered and, lo and behold, after just a couple days on the job, the voice went again. By this time I knew the drill, so I immediately researched the most well-regarded vocal therapist in the area, and scheduled an appointment.
Of course, it took multiple weeks to even see her, so I had to go on FMLA leave again. At this point I was starting to seriously eat into my savings I had carefully built up. Have I mentioned that FMLA leave is unpaid?
Regardless, given that my computer use had switched over almost entirely to voice, and I was still talking for my sales job, I suppose losing my voice was inevitable. At the time though, the defeat was crushing. First my legs hurt, then my jaw, my hands, and now my ability to even communicate with other human beings. What would God take away from me next?
I sunk into a pretty deep pit of despair at this point. I had struggled with suicidal thoughts as a teenager, but it’s a different animal contemplating suicide past 25 due to medical complications that multiple doctors have told you are essentially incurable. Admittedly, the drugs and booze probably didn’t help.
So I went to the vocal coach, added another set of tasks to my daily exercises to manage my various conditions, which at this point had ballooned to over two hours a day of stretching, doing vocal warm ups, doing specific exercises, self-massage via tennis ball, and resting in various positions to take the stress out of certain muscles.
At one point during this time, at the advice of my vocal coach, I completely stopped talking for two weeks. The idea was we could perhaps “reset” my vocal cords, and help me learn to speak in a more “natural” way. At first, this was brutal. I had always been quite chatty, and the silence was agonizing the first few days.
But after about a week of no talking, something strange started to happen. For the first time in a LONG time, I didn’t feel quite so hopeless. I couldn’t have explained it to you at the time (because I was silent, duh! ;P), yet I just started to get this sense of silliness. That even though my body was falling apart before my 30th birthday, my relationship was on the rocks because I couldn’t even talk to my girlfriend, and my managers were looking for excuses to fire me, there was a sort of… underlying okayness to the whole thing. I was able to laugh, and relax, despite my circumstances.
The Gates of Repentance
This priest has the best voice ever, seriously. Check out this chant, it’s amazing.
A little before the voice loss I had stumbled upon some people in the Talon Voice community talking about chronic pain being a spiritual/emotional issue. Up until now, I had sort of brushed this off while thinking eh, even if this is an emotional issue, how am I going to fix my emotions? I was already doing therapy as well and that barely helped.
So there I was, over $15,000 and years of my life spent on medical treatments that amounted to temporary bandaids at best, with little to no understanding of the deeper roots of my chronic pain, or how I was going to fix it. I had some inkling that maybe there was an emotional or spiritual issue, but I barely took it seriously. From a ‘logical’ perspective, things seemed quite bleak.
Something in the silence spoke to me, though. Despite my utter lack of belief in anything beyond the material, physical reality, I began to feel as if a presence was watching over me. I didn’t know it at the time, but looking back, it’s obvious to me that it was Christ reaching out, now that my heart had finally been humbled enough to hear Him.
Thomas Merton says:
In silence, God ceases to be an object and becomes an experience.
Perhaps he’s right.
While it would take a while for my heart to fully turn around, the bitterness that had consumed me slowly started to lift. Possibilities began to open up, doors opening that had seemed firmly shut. Before I began to believe in Christ, or even the supernatural, I started to believe in myself. In Life. From seemingly out of nowhere, a hope blossomed in my chest. A hope that I wouldn’t be a cripple, that I’d get to live a good life, despite my troubles, that somehow, some way, I would be able to overcome the various illnesses that had plagued me from my youth.
Glory be to God, that hope has been fulfilled. That’s a story for another time.