IamA severely disabled(wheelchair bound) speed typist who has been in the NY Times for sustaining over 220 words per minute&a white hat hacker specializing in mitigating DDoS attacks. Since 2017, I have suffered from a rare form of brainstem c...

I just wanted to say thank you for sharing and I’m glad I got to read about your story. It’s great that you have lots of pets and family support. I hope you are well.

What were/are some of your favorite shows and video games?

One day at a time.. It's a painful life, abortion was recommended and I was not expected to survive for even close to a year.

I'm currently finishing up watching Arrow. The Flash(CW) has been absolutely fantastic, though a few seasons were confusing they have redeemed themselves quite well. Cobra Kai is brilliant as well. For comedy, I'll sometimes watch Family Guy&Impractical Jokers with my mother. If we're talking anime, I'd say Hunter X Hunter, Naruto, Black Clover, Seven Deadly Sins Kengan Ashura and Death Note all rank quite highly for me.

League Of Legends is the game I probably have the most hours in, though I've lost interest in gaming quite a bit over the last year or so. Tekken and Rust are on that list as well.

Please feel free to ignore my question. You mentioned your parents were advised to abort you. I’m curious about whether you would have rather never lived? Do you ever blame your parents?

I know it’s a difficult topic, but from your perspective, what would you advise parents who before or during pregnancy get to know that their child might have (severe) disabilities?

For the first 18 years of my life, I was a very unhappy kid. I compare my life to being stuck in the starter zone of a video game: You get to see all the other kids running around, doing cool things and getting rewarded for it. But anytime you try to participate yourself, you're given an error and told to subscribe. It's like being in a different reality entirely. - In my current state of mind, I'm grateful that I have gotten to do the few things I am capable of and spending time with my 2 nephews and young niece. I would be a liar if I said there weren't days(or years) where all I felt was resentment, bitterness. I frequently use to ask my mother why she gave birth to me, knowing full well the possibilities. But.. There's so many people out there that think their lives are worse than they really are, I've been guilty of this myself. Be grateful you aren't in a warzone and have a roof over your head, many wouldn't last a day in a foreign country with the mentalities that most Americans have. I'm not undermining their suffering, being a human even without a physical (or mental) ailment in this day and age is HARD. I get it, I really do. I would have every right to be vengeful, vicious and despise the planet. But I don't, why? It's rather simple. Every drop of blood, every conversation you have that intentionally strikes fear into someone harms the human race has a cascading snowball effect that you do not intend for or even realize. I have said and done things I'm not proud of myself. I've had nearly 25 years on this planet, but it feels more like 100 considering I was done with Ivy League by my 16th birthday and broke over 100 bones in my first year of life alone. I often use to post complaining about not being able to walk and the like, that's not who I am at baseline. That's anger, resentment, bitterness. Want to know what I *SHOULD* be focused on? Spending time with those who care about me, making their lives better, and persevering through all medical diagnoses. Even the terminal ones. I encourage people to not let your mood dictate how you treat others. If you've had a brutal day, unwind. The overwhelming majority of the human race suffers in one way or another, whether it be a physical or mental battle. I get it, depression and anxiety kick in and it's a struggle. But a futile one. If you don't even have control over your own words, how can you expect anything in life to go your way? Also, if love is just a word, why does it hurt so much when you realize it isn't there? I have been swatted with 3 entire roads blocked off and 20 police at my front door, all with AR-15's. That would terrify most people, and while it certainly wasn't a fun experience I never once questioned giving upon my passions. At the end of the day, you need to be ok with the identity you have built for yourself. I live a double life of sorts when it comes to digital, some of which my friends/family will never see on social media. (The arrest of hacking groups)

But when I think back and realize it was recommended for me to be aborted 25 years ago.. Pfft, I've aided in the arrests of several hacking rings extending all the way to Ireland and the Middle East, and I'm also challenging the New Jersey State Prison. I generally don't need help on these crusades, with a few exceptions when it comes to dealing with swatting groups. I've shattered my bones over 500 times when we only have 206 in our entire body. I'm one of very few people with OI to survive a severe fall. At my peak, I'm one the fastest typists on the planet and there isn't a non-governmental hacking group on the planet that can outmaneuver the connections that I have made. (unless we're talking about a footrace) Yeah, I'm disabled and will never know what it's like to run around or scuba dive etc. That's something I have to come to terms with, some days will always be harder than others as for all humans.. My advice? Two simple words:

Be kind.

My personal take is that if you know a child is going to be born with severe Osteogenesis Imperfecta, or another crippling disability, bringing them into the world is unethical.. But that's going to have to be up to the parents themselves at the end of the day.

Thank you for taking the time to write this answer and sharing your thoughts. I very much appreciate it! One thing I take from your story is that you still have a very valuable life, despite your conditions.

edit: and perhaps also that we shouldn’t be so focused on ourselves rather on others and be kind towards them.

It's all about balance. You need to take care of yourself, but ensure you aren't being dismissive of others. Nobodies perfect, I've been an ass on plenty of occasions. Don't beat yourself up for what you say/do, ask yourself for the reason behind it.

Thank you for taking the time to write this answer and sharing your thoughts

Dude did you not read his typing speed? It probably took him 30s to write that!

787 words, so about 3 1/2 minutes.

I'm so staggered by your speed. I plateau at around 110. I can't fathom people going over twice as fast. Kudos.

110 is still far above average!

Do you ever find that your thoughts can’t keep up with your fingers? Like your fingers have to wait on your brain to catch up while it thinks of the next word? 😂

All the time!

I love this.

You sound like a strong, brilliant, wonderful person who's doing a lot of good in the world, and the world would be a hell of a lot better with more people like you in it.

I'm sure Stephen Hawking had days in his life where he felt similarly bitter and resentful. I'm sure most people have. Hell, I certainly have and I don't have any major health issues. It's all a matter of perspective, I guess.

It really is perspective. It still baffles me that Stephen Hawking was able to survive for so long with ALS when there's nobody else even remotely close to making it that far. Truly superhuman.

I keep an odd sleep schedule, it's 6:30 AM and I've been up for quite some time now. I'm going to go ice my neck and watch Arrow: I will respond to every single question when I reopen Reddit(Or when I wake up if I end up falling asleep)

Much love to all of you. A quick note: The GoFundMe link was for proof of disability, not a donation request. Please do not feel obligated to give a dime.

I posted this 4 hours ago and some people ended up donating to the GoFundMe anyways. I never expected this type of response. Thank you all so much. (Also, no idea how/why I'm still awake when UFC starts in about 8 hours..)

Just reading your story man and it truly is remarkable. Big ufc fan here as well, I am just sitting waiting for the card to begin in a couple hours. All the best! :)

Was a great card! Feel bad for RDA though. Cheers!

Have you been able to/Are you still able to work in some way and earn a living?

What’s on your mind a lot? Do you worry a lot? Do you think about things you still want to do and how to do them? Do you think about family and friends a lot?

I have a job at a car dealership very close to my home, I wheel down the road and it only takes about 10 minutes to get there. Quicker if I'm really exerting myself, I have worked there for three years. My job there primarily consists of listing new parts, deleting old tags from the database, maintaining inventory and protecting the digital cloud. There have been several thefts there over the last few years, recently $60,000 worth of catalytic converters. The pay is not great, and the schedule is inconsistent, especially lately due to the uncertainty of whether or not I'm going to black out. For other sources of income, I am on SSDI(Not a great amount of monthly pay, but better than nothing) and am often paid by people to configure website security and things of that nature. All of these, combined with the GoFundMe linked in the OP which has raised $6000 in a 17 month period have helped me stay afloat for the time being. As far as unpaid jobs go, I have been involved in the arrest of several black hat hackers who were running DDoS-for-hire tools. This has made me a target in the past, and 3 years ago I was swatted by someone in the Middle East: He called my local PD and stated that I was in a wheelchair and had just shot everyone in my house. 3 roads blocked off, entire swat team. About 20 police with AR-15's at my front door.

I'm in a constant state of worry, particularly about the potential of a flareup sending me to the hospital at any time as well as the opiate epidemic making it quite difficult to get prescriptions refilled on time. We currently have 11 dogs, 5 cats, 4 birds, 2 bearded dragons. I have two brothers and a sister, all older than I with no medical issues. I'm the only one in my entire family history with any sort of physical defect. It was a random genetic mutation. My friends&family are what have kept me alive this entire time, they are always on my mind. I have always had a very strong interest in the ocean, previously having gone snorkeling in Florida after breaking my femur the day before. I just pushed through the severe pain of a 20 hour car ride, went kayaking with manatees with a leg that should have been in a cast. By the time I was back home in New York, the femur rod had fallen into my knee and had to be replaced entirely.. Needless to say, the recovery process was long: But it was worth it! I would love to be able to scuba dive as well as drive, but with prolonged compression it does not seem those dreams will ever become a reality.. The overwhelming majority of my life now is spent in front of a laptop in a hospital bed at home and a box of medications. I always use to say that the broken bones were the worst, and I would do anything for them to go away.. Well, my last fracture was on my 18th birthday by falling out of bed: So, if I make it another 5 months, I will be 7 years break-free when previously I could not even go a month or two. Sadly, this has been replaced with the severe neurological issues. It almost feels as if I am constantly on psychedelics, the only way I have been able to describe it to doctors is I "feel" very confused yet I remain coherent. Great question, thank you!

From the brief description of your skills, it sounds like you could get a job as a remote security engineer. Do you feel stuck in this current role?

No, I'm not stuck in my current role. I'm not on a set schedule at my in-person job and could not go in at all if I really wanted. I do random jobs for people to help secure their websites, computers etc: Remotely.

Regarding work, have you thought about becoming a professional typist? There are a number of opportunities available such as court reporting or live captioning.

I have done transcription work in the past, but AI is taking over. Even court reporting and live captioning are being taken over by AI at this point. My last transcription job was replaced by a 5 cents per transcription AI service

What about software engineering? Machine learning? Data science? Sounds like the kind of thing you'd enjoy?

I have interests in all of those things, software engineering is pretty incredible. I also have a strong interest in AI

Thanks for your candidness. Much respect and love bro. Great YouTube channel!

Much appreciated! Much love <3

That's some incredibly fast typing. Do you ever use this power to trash talk people on the internet at 220 WPM? Can you do it to me?

Sure. You are a failure, everything you ever aspired to be has failed. You infect those around you with negativity, even your own parents are ashamed of you. I cannot wrap my head around how you are not imprisoned with all of the things you have done throughout your life. There's a special place in hell, if one exists, for people like you. You will never know the meaning of true love or have a single day of peace. The rest of your existence is going to be nothing but futile suffering.

(Mods this was requested sarcasm please don't ban me)

I even read this fast! Also, you're the guy on TypeRacer who I always wonder what planet they're from when I see them casually machinegun letters at twice my speed. I thought I was a fast typer, but TypeRacer has given me a slice of humble pie.

You likely still type at above average speeds. The typing community just has a lot of prodigies nowadays.

Have any experimental companies contacted you to study the gifts ? I imagine maybe in 50-100 years they might be able to do something like this for people wanting to pay for memory like that

Guys, I understand initially hearing " doing experiments " is a no no. But he mentioned no questions are off the table and being able to create a new era of brain activity for humans for the future is more of a legacy than most of you hunch back self righteous thinking people could ever make to all humans ever on the earth. I'm against inhumane things, this man obviously wants to help humanity before he leaves this earth. If you read his intro you would understand.

No, though that would be incredible. I have had EEG's in the past, but I am curious as to what the brainwaves would look like if I was focusing on a particular song.

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I was on Blue Cross Blue Shield/United Healthcare Community&my fathers insurance plan through his work until his retirement. Sadly, there are many overlaps when it comes to insurance and I often have to GoodRX my prescriptions (They'll cover generics, as well as other things, but as an example when I was using extended release Oxycontin instead of immediate release it was $700 for a mere 30 pills. I'm on 150 a month(5 a day), so you can imagine how quickly that would add up. I am on Medicare. It's kind of disturbing how little is covered, especially when it comes to prescriptions. I got unlucky with the switchover of insurance timing when the ambulance bills started piling up. They were previously 100% covered.

Talk to the ambulance company. Explain to them your situation and there’s a good chance they offer financial aid.

I was in a car accident a couple of years ago and I had to be life-flighted to a trauma center. I don’t have insurance, so for that little helicopter ride I was charged $45000.

I told them I didn’t have insurance and I wasn’t working because I was filing for social security. They said no problem, they had financial aid. They sent a form over for me to fill out. I sent it back and they wiped out the debt.

Moving forward, I have a full DNR/DNI signed now so there will be no future ambulance rides. If it does kill me, I've decided not to fight fate. Ambulance companies in NY are vultures: Never received any aid.

Ambulance companies, In General, are set up to be vultures.

Then when you work for them and see it everywhere including the burnt out coworkers who say things like “the best part of these bullshit calls is knowing these people get thousands of dollars in bills for calling with stupid shit”

That was my field training officer at Grady health system. Funny how people like that last the longest.

You're absolutely right. The amount of people that call an ambulance for weed-related panic attacks and other silly things that are generally over with by the time they even arrive is absolutely insane.

Check into ssi and medicaid. You may qualify. Medicaid will pay almost all of your medical expenses. It has its limits of course. And there is some red tape. But it covers a lot and there is little to no copay. Source: my son is disabled and gets ssi and medicaid.

I was on SSI until my fathers retirement, I now receive SSDI instead. Not much difference with the exception of no limit on how much I can have in my bank.

220 WPM?? I’ve been in typing classes since I was 11 because they were easy A’s and have typed 100+ since middle school but had no idea 220+ was even possible. Amazing!

It's definitely a rarity. Even 100 is far above average!

I've been stuck around 130-140 for decades now, how do you do that push to get beyond your limit?

I would advise you to go on typenconquer .io and see how many typists you can eliminate. After you type a word, the color of the square will change. My playstyle is to control as much of the board as possible, and then you can move with your arrow keys across the colors you control. Some prefer to stay hidden, I hunt down the top 3 right off the bat. Also, incorporating your thumb that is not used for space will give a MAJOR speed increase once you get the muscle memory down.

Interesting. I have some quirks that I've never been able to work away from (only ever use left shift, and I hit the B key with the wrong hand) but I've not considered using my right thumb for anything. Are you talking about using it for space as well or using them both for the lower row as well?

Look at the video I attached in the OP titled "Video of me sustaining over 200WPM on a 60 second test" - you can slow it down a bit and see the right thumb. Left thumb for space, right thumb to press other keys and free up your other fingers. I also only ever use left shift.

now ex-girlfriend

Might’ve been an awkward wedding speech otherwise

What’s it like having Bruce Willis as an arch-enemy?

Oh big time. We stayed together for about a year after the accident. I ended things with her. Unbreakable was a great movie!

How hard do you have to focus on the lyrics for them to become auditory? Do you hear all the accompanying instruments as well?

Would would your experience be like if you were to learn how read annotated music, I wonder?

Oddly enough, not very hard at all. It was not an ability I had before the brainstem compression. I just need to set my intent, and I can be in the hospital with no headphones around and boom Pop Smoke starts playing in my head. Yes, all accompanying instruments as well as the beat.

Is this rare? I've always had this ability, assumed it was similar to what everyone else meant when they "got a song stuck in their head."

But I've also learned many people don't have internal "voiced" thoughts either, so there may be more differences to the internal experience that people just don't talk about.

it was similar to what everyone else meant when they "got a song stuck in their head."

for me it's just a few catchy notes of melody or words of the refrain that I keep repeating (singing/whistling/humming) in my head, but certainly I don't hear the song with all the instruments etc

Yeah, it is definitely a rarity. I can only chalk it up to auditory nerve issues.

I think in my case it's quite rare, as others with a "song stuck in their head" don't have quite the same experience.

I think what he's describing is different, as he's hearing music as if it's physically producing sound, almost like a hallucination. Hearing a song stuck in your head is a bit more abstract and is more like an intrusive thought.

It's an odd phenomenon. It doesn't sound exactly like I'm listening with headphones on or with speakers, it would be an issue if it gets super loud and interferes with conversation. Luckily, it doesn't. And it only occurs when I want it to.

Is that not a normal thing? I have always been able to do that.

It is a normal thing to an extent, but if I focus for long enough I can pretty much play entire albums in my head. And it really doesn't sound much different from listening with headphones.

Are you planning to write your memoirs? To me, it sounds as if you definitely have more than enough material for a very successful book.

And did you break up with that girlfriend because she wasn't watching where she was pushing you - or was it some other issue?

P.S. I feel quite healthy now. (MS, breast cancer, hip arthrosis, slipped vertebrae). I can walk, even if it hurts.

I don't have any writing plans at the moment. We broke up because she was insistent on having kids and wanted to remove her birth control implant, and me being a carrier gives a 50% chance of my child having OI also. I will not risk passing down these genes to another generation.. Too much unnecessary suffering.

I completely understand not wanting to have a kid suffer like you have. That current (relation)ship has sailed but now there is IVF for gene selection if you find a future partner and you'd want to have a family with. NY is one of the states that covers it with insurance.

I've given up on the dating scene. While God compensated for my lack of leg length for my third leg, my growth plates closed by the time I was 10 due to bones all shattering so frequently. I'm 4'3(130cm) - In the world we live in, no woman has any interest in someone that short. I don't hold it against them, I don't know if I'd be dating someone with a disability if I was a female. Especially the absurd height difference.

Didn’t consider her having a sperm donor or adopting? I mean, assuming that was the only issue

There was a lot more to it than just that, keep in mind we ended things in 2016 when I was only 19.

Yeah, having kids that young is not a good idea. It sounds like you made the right call.

Not to mention the fact that after I broke up with her she took copious amounts of LSD and ended up being diagnosed with schizophrenia.. Dodged a bullet, too bad I didn't dodge the prom accident.

How did you get such godlike typing speed? I thought I was good but I'm just a mere mortal

There are people out there faster than me, though at peak I can hang with the best of the best. Sean Wrona, who is perhaps the best well known modern typist, lives only about 20 minutes away from me: He visited me in the hospital in 2018. Your speed is far above average!

have you tried Dvorak or are you still rocking the querty?

I tried Dvorak after a close friend of mine who goes by the alias Loboru introduced me to it. I stared at the layout for a while, memorized it and then was able to clock in a few 80-110wpm or so scores an hour after first trying it. However, the curvature of my right forearm that I will never have fixed works wonders on QWERTY as it allows my right thumb to hit N M J K L and the comma and period keys.

Wait. You press L with your thumb??

Yes.

Do you use the standard QWERTY keyboard layout or swap to others? I've hit a pretty solid plateau around 120-130 WPM average on 10fastfingers.com with QWERTY. I've been tempted to learn the DVORAK layout but it doesn't seem well-suited for programming work

Standard QWERTY on a laptop. 10fastfingers moderators harassed me while I was hospitalized for a verification video, so I've switched to Monkeytype. Far larger community, better wordlist, a gigantic Discord that even did an @ everyone ping for my ongoing GoFundMe.

Hello OP! Just want to say that I am inspired by your positivity despite the challenges you have to overcome on a daily basis.

You can ignore my question if you don't feel like amswering.

As I, some random person on the internet who is currently experiencing their lowest of the low, how do you remain positive in life? And how has your mental health been?

Wish you the best

No ignored questions here! I'd say my mental health could be a lot better, dependence on opiates and benzos is incredibly brutal.. Some days are better than others. Main concern is going into withdrawal at the end of the month as pharmacies around here aren't too great at ensuring refill dates.

2nd try, first comment was removed as I didnt put a clear question.

Have you looked at an intrathecal pain pump to help manage your pain vs using oral pain meds?

I have Chiari and had my decompression surgery 20 years ago at 20 years old but it did not help my symptoms unfortunately. As a result my Chiari headache has been 24/7 for the last 2 decades in addition to a bunch of other fun symptoms. I also managed to break my neck on a trampoline when I was 13 which has resulted in a number of cervical spinal fusions. I tried a spinal cord stimulator which helped some but became less effective over the last year or so. I'm now doing an interthecal pain pump trial in a few weeks to try to get my pain better managed. Not sure if that's an option for you considering all of your complications. I can't get an MRI anymore either because my doc put in a non-mri compatible stimulator in. Because I have so much scar tissue they couldn't remove the paddle lead on my spinal cord so that thing is there for life.

Sorry about everything you're going through. I hope you're able to get your pain better managed. It sucks losing the genetic lottery but I'm glad you have a good attitude about it.

We've tried just about everything possible for pain relief. Dilaudid, morphine, hydrocodone, extended "24 hour" versions of hydrocodone like Hysingla&Zohydro, tramadol, 50mcg/hour fentanyl patches. While they all provided some form of pain relief, only immediate release oxycodone keeps both the pain levels and neurological symptoms in check. I wanted to switch pharmacies as mine flagged me for a single early refill, so not only do they hold me to 30 days but they also do not count the start date.. The wildest part? They applied the 30 day hold to everything, even Valium&tegretol when it was only the Oxy that was called in a day too early. Sadly, only one brand of oxy has really worked for me and I contacted Walmart to see if they could get it and it was a no. So, I'm guaranteed withdrawals at the end of the month unless I cut back on my dose a lot for a few days, which probably is not an option.. I'm sorry to hear about your injuries. I hope they get your pain under control <3

I've dealt with the pharmacy thing, it's a huge pain in the ass. If you have a small local pharmacy they tend to be a bit easier to deal with. Walmart is one of the worst pharmacies for pain med prescriptions. I'm currently using Walgreens, they've at least been a little easier to deal with.

The reason I'm going for the pain pump is because since it's placed directly in the spinal cord it uses significantly less medication to get results, usually around 1/300th the oral dose. You get less side effects and better focused pain relief, at least that's the idea anyway. It's not without issues but it seems like the best course for me as I don't have any other real treatment options.

Yeah, Walmart only carries Rhodes Pharmaceuticals for immediate release Oxycodone which should be illegal to even be on the market. Basically placebo pills. I hope the pain pump works wonders for you man <3

Thanks, I hope you're able to get your correct pain meds so you don't have to go through withdrawals. I can't count how many times I've had to go through withdrawals because of a insurance or pharmacy screw up.

Same here, my friend.. Same here.

How often do you struggle with darker thoughts or anxiety related to your disorders?

What have you found that provides any mental relief?

Daily. There's always some dark thought or anxiety involved. Meditation, Wim Hof breathing, and making sure I have my Oxy&Valium in my system to control the pain and spasms.

Sorry for the unpleasant question. I'm working on my own lesser strugglers with Crohn's so I was curious.

I hope things go as well as possible for you.

Never define your struggles as lesser. If I shatter my femur and you break your hand, your hand does not hurt any less. Never forget that the suffering of others does not diminish your own. <3

Do you have any visual symptoms as well? I'm an ambulatory wheelchair user due to various Neuro issues and experienced a change in auditory perception (mine got worse, not better unfortunately) as well as visual shenanigans. Wondering if you have any fun light or color shows too!

No visuals. When it all first started, I thought I was psychotic or something until I realized that my entire nervous system just didn't like me.

Hello from another OI-type-3 from Finland! Always interesting to see OI pop up in r/IAmA.

Are you in touch with the American OI community? Have you taken bisphosphonates?

How would you feel about my completely unscientific observation that despite the physical challenges, OI people are typically quite intellectually capable? We show up disproportionately often in a positive light, despite the rarity of the condition. (I feel the need to point out that OI is actually one of the more common "rare" disorders though).

Sorry to hear about your basilar invagination. That one is a nasty complication. :-(

Wow, did not expect to see someone else with OI on here especially type 3. I was, and still am, the youngest patient to ever receive bisphosphonates. I was given Aredia, aka Pamidronate at 6 weeks of age in an IV in my head at Montreal Shriners. Those treatments continued until I was about 14. They tried one dose of Reclast(Zoledronic acid) that I reacted poorly to. In 2014, I received several Prolia injections that were $1200 a shot and have not broken a bone since. OI is one of few disorders where there is no opportunity for improvement in terms of physical health, a lot of other conditions people will have to work significantly harder in order to achieve what they want to do: In our case, as you know.. Many things are off limits. We are forced to mentally mature at a much earlier age, as in the first few years of life alone we endure the suffering of hundreds of lifetimes. That alone, in my opinion, provides mental toughness.

Bisphosphonates really are incredibly useful; I went on Zometa 15 years ago for a while and that stopped my until then pretty much chronic rib fractures. Can't remember the last time I had one. My understanding is that currently severe OI kids are started on them pretty much right away, so your record may no longer hold.

I have also entertained similar thinking to yours; but there are so many other disabilities that limit a child's ability to function normally. Yet it seems to me that it's OI kids in particular who are often some kind of prodigies. I was pretty gifted from the start as well, in particular verbally. It is certainly possible that we need to learn to communicate our needs much faster than other kids.

I understand that in your case it's the neurological issues that is the really nasty shit and it makes your situation grimmer, but I'd like to offer a slightly more positive take on this "many things are off limits" stuff, perhaps for the benefit of other readers of the thread.

It is true that I couldn't dream of being a pro ice hockey player as a kid, but it was very clear to me from an early age that by studying and applying my mind a lot of things would be possible. In my 20s I managed to let some depression and cynicism take hold for a while, but I pulled through that and life has been on a very agreeable upwards trajectory ever since. I'm now 43, I work as a software engineer, live together with my gf (who also has OI, incidentally) and we're always looking forward to the next fascinating evening out in some nice local restaurant when we're not absolutely killing it in our own kitchen...

I would say that one can live a happy, fulfilled life even with OI type 3 provided the condition stabilizes (it often does after teen years) and one is not in chronic pain. These are of course not a given for everyone, unfortunately.

The record, I believe, still holds due to parents generally being fearful of giving drugs at such a young age. They wanted to do it at 4 weeks, we waited 2 weeks and decided on 6 weeks instead. That being said, I'm sure there's someone out there who received it earlier by now that's undocumented.

Everyone with OI I know is eloquent. I certainly won't live until 43(or at least have no interest in doing so) - But perhaps my opinion will change with time. A few more years relatively pain free is more than enough in my book. My life revolves around prescriptions at this point.

Have you ever broken fingers doing Speed typing challenges?

The chiari malformation resonated with me. I had a small herniation diagnosed, originally from my LP shunt over draining which sucked that niggly bit down. It was all complicated in that the month they discovered it, through mri etc, my LP shunt failed anyhoo, so treatment was a cranial vault expansion (top part of the skull, rather than back of the neck) to make my head bigger to take more fluid in there, and relieve the Chiari with out having to go down decompression surgery. If I'm honest with the research I did into decompression surgery, especially from people who'd had it and it hadn't quite been fully successful, I wouldn't have done it either 20 odd years ago now.

Thank you for doing the AMA.

I have never broken a finger while typing, luckily. Though when I was younger I somehow shattered my Humerus pressing down on a stuck spacebar while playing Puzzle Pirates Swordfighting.

I think the decompression in my case was necessary, as when they got into my skull it was much worse than CT scans showed(I cannot have an MRI due to the rods) - one of the bones was stuck so far into the skull that removal accidentally tore the dura. No major complications. Sadly, the primary issues remain.

From what you've said, I don't think there was a choice with yours. But it gives me a whole new respect over people who have a chiari malformation, but more so after surgery too. When I was looking it up, I think a lot of people found that a lot of the symptoms did remain, which was one of the big things that put me off. It's not an easy surgery by far, whether it's a small herniation, or if your case with pretty bad pre-complications.

After your surgery, as you said your dura tore, did you experience anything like "ghosts" in your vision. I had a weird thing after the vault expansion surgery, which they released pressure under the dura as well, where I was seeing shadows of things, best way I could describe it was ghost images in my vision. I'd got massive optic nerve swelling anyhoo, but I couldn't really explain it to the neuro, but she'd told me that it was likely because they'd had to open the dura up, and as it healed back shut it'd resolve itself, which it did. But it was bizarre, like I was seeing a whole different world combined with the real one.

I have had periods of blindness as well as severe muscle spasms that start in the neck and will go all the way to my eyes sometimes clenching them shut. The most likely explanation for what occurred with you is constantly changing levels of CSF(Cerebrospinal Fluid Flow)

Hi! Can you tell more about what it's like being a white hat hacker?

Also, which advice can you give someone who's dealing with a disease that tends to flare up with no reason and unexpectedly? How do you deal with the anxiety?

It involves a lot of guesswork, ensuring that websites do not have obvious flaws that can be exploited and that their backend IP addresses are not exposed for easy Distributed Denial of Service attacks for starters.

The answer is going to be different for everyone. When it first began happening, my worst fear was that the deficits were going to be permanent or I was going to go crazy etc. I still struggle with understanding exactly what my brain is doing as the brainstem is such a complex region. I have been on a high dose of both Oxycodone&Valium for years now, though the valium is more-so to ensure my neck doesn't start spasming and cause my entire body to contort in odd ways as opposed to an anxiety treatment.. It's always going to be terrifying: You need to keep in the back of your mind that while the present moment sucks(I'm currently dealing with pretty severe pain and OCD+spasms) - that doesn't mean all of them are going to suck.

I'm pretty interested in your typing prowess, I see that the typing test video you linked to was of one of the simpler ones with random words and no punctuation, etc. How fast can you do it on TypeRacer? My favorite Twitch streamer Reckful who sadly passed away a few years ago could put up crazy numbers (over 200 wpm) on the more advanced tests and I'm wondering if you could beat that.

Just to clarify; I'm not trying to talk shit because I can't even come close, I'm just curious.

I encountered Reckful in Typeracer lobbies quite a few times before his passing. He was a great streamer and also a fantastic typist. In terms of speed comparison though, his all time average was about 30 or so below mine. Heartbreaking all around, the WoW and typing community lost a legend.

I am the ceo of a cybersecurity company and would love to have a conversation with you if you’re open to contract work?

Sure, shoot me a message! Can't guarantee things will work out with scheduling and the uncertainty of my conditions though.

I would also like to request that people do NOT donate to the OI Foundation as a result of this post. As they are a nonprofit, their numbers are public. They have been incredibly vile, so much to the point that I do not even want to post the screenshots on Reddit. This includes anonymous death threats.

Have you ever tried hyperbaric oxygen chambers? It’s kinda uncommon but it might increase quality of life. No idea if it is feasible.

There are also the zero g type saltwater float pods, might help but no idea if they’re affordable.

Sounds like you are super resilient, I hope you have more good days than bad.

I have not tried any of the above. They're unsure how the intracranial pressure originating from the brainstem compression would react to the chamber or a zero gravity pod.

Can you ELI5 what a DDoS attack is and how one mitigates them?

A DDoS attack, also known as a Distributed Denial of Service, is when an attacker is sending so much junk traffic to the server IP address that it is inaccessible to all users. DDoS attacks on IP addresses occur at the layer 4 protocol. Layer 7 DDoS attacks emulate millions of people all visiting a website at once, which can cripple services even on Cloudflare: They're complex. Mitigation includes banning traffic from particular countries(DDoS attacks generally have most of the traffic originating from one country or very few) - that is known as geoblocking. For Layer 7, things like captcha's and rate limiting(Basically setting a limit on the amount of times one IP can access a website in a particular period of time) are the best bet. Captcha bypasses do exist, but they are not cheap.

What's the most typical motivation and target for these?

Also thanks for the reply!

Oftentimes it's bored teenagers wanting to cause mayhem, other times they'll hold a server for ransom etc.

So they just pick a target and try to extort money?

Probably not quite the same but my company was the victim of ransomware once. I think it was my mother who opened it and it started taking over the company server with a message saying pay us and we'll give you your shit back lol

Yes, oftentimes targets are selected at random or if they're considered to be easy pickings.

Hi OP. You are an incredible writer. Have you given any thought to authoring novels/books?

Thank you very much. I really haven't given much thought to writing books, though it is something my family has been wanting me to do for years now.

I'd love to hear more about your typing prowess. Is there any demand as a stenographer or transcribing the president live type thing? I know stenographers use a different method to type but at your speed you could surely just transcribe everything word for word (letter by letter)?

What is your preferred keyboard?

How long did it take to reach 220 wpm?

How much do you think people are limited by their ability to copy/ transcribe vs how quickly they could type if they were just freestyling?

I type solely on laptop keyboards. I always used a laptop as a kid as a desktop was impractical, I could bring the laptop with me to the hospital and also I spent the first 18 years of my life mostly bedridden from fractures in arm/leg/spica casts so all I've ever really known was a laptop.

On my 15th birthday, I averaged 146wpm. I have been capable for years of getting high wpm on short quotes, but I started setting my personal bests in 2020. Yesterday at 6:13 AM I set my personal best for a 10 word burst on Monkeytype reaching 257wpm which gave me the "Burst God" role.

People are limited by the fact that they try to use home row or keep their hands in particular positions. Freestyling, while in the short term may slow you down due to accuracy, is absolutely the way to go.

Hey, can you explain what freestyling is? I only know how to type using home row; I have no concept or knowledge of this freestyling you speak of..

Freestyling is just the opposite of home row. You place your hands wherever they're most comfortable and let them fly all over the keyboard. Home row is criminal and slows so many people down.

In your opinion, what are the best network security tools (manufacturers)? And, what combination of these tools make for the best network security posture (ie SIEM, NDR, EDR, AV, IDP, IPS, etc)?

You need a multi-pronged approach, preferably with rollover DNS or some other failsafe in case of a malware or prolonged DDoS so you're able to back up your system. Nagios, OSSEC, particular Tor nodes, Acunetix are all pretty necessary(Maybe not so much Tor) - Most home networks no matter the Network detection&response solutions are unable to do anything against an attack. FireEye, Imperva, CyberArk and Cloudflare all do their intended job quite well.

Do you use a standard QWERTY keyboard to reach those speeds?

Yes, standard QWERTY laptop.

How long did it take you to type the original post?

I didn't even really put much thought into it, probably 2-3 minutes for the actual typing and then 5 figuring out the proper way to attach links.

Hi OP, do you feel like the medicaire/medicaid requirements in your state are really strict? I have a friend in GA with cerebral palsy, he's wheelchair bound and is independent but lives on very little. If he makes too much he wont get anymore medical aid and those expenses are way more than his income. It makes prospects of getting different jobs and moving difficult to say the least.

Also do you enjoy Bomb Party? I bet you destroy at a game like that.

I wouldn't say particularly strict. When I was on SSI instead of SSDI, there was a limit to the amount of money I could have in my bank account at one time. In cases like that, opening a "SAFE" account will allow you to keep as much money as you need. The issue is nationwide, opiates are so demonized due to overdose deaths that it makes acquiring them each month quite the hassle.

Typenconquer . io is basically bomb party with more people.

What exactly is a SAFE account? I got confused when trying to look it up.

I got to look up that io sometime, maybe me and some friends will get better at our typing.

Sorry, I guess the name changed to ABLE. ablenrc .org

What year did you graduate from Cornell? Have you ever done anything with your degree in oceanography?

1. Not a single thing. Was an interesting learning experience though.

Will respond to all remaining questions after UFC is over sometime tonight. Cheers!

Dude the fact that you have to pay so heavily in both body and to doctors just to live is insane. We're the same age, and yet you have so many accomplishments, being more successful than most people in our generation. And you're not asking for pity for your disability, but rather making people aware, which is important in getting funding for the cure so it can never affect anyone else in the future. I guess I have a lot of questions, mostly related to your health, but how about this:

Do you think you could fight a walrus?

I bet he could fight TWO walruseseses… Fingers that fast? They wouldn’t even see it happen.

No, I could only handle a single walrus. My short stature would make it easy for them to overwhelm me in a 1v2 scenario.

Much appreciated! Life is uh, far from great. But I do what I can with what I have, my world is a digital one. I reckon I could easily overpower a walrus.

Curious why you use the term wheelchair bound to describe yourself. I personally find it quite limiting, since the wheelchair to me is not something I feel bound to, it gives me freedom of movement.

Besides that, curious about your memory: do you have any synesthesia? Most people with naturally good memory have some type of synesthesia or visualisation related to their memory. Do you visualise the lyrics to remember them?

Hope you are doing well!

I'm the opposite, to me the wheelchair is an obstacle that cannot be overcome: It represents everything I'm incapable of doing. Running, scuba diving, driving, sports.. The list is endless. They don't work particularly well in snow and rugged terrain, they have to be carried over steps and particular curbs.. I use the term wheelchair bound, because I am bound to the wheelchair. I don't visualize the lyrics to remember them generally, though it would not surprise me if I do have synesthesia.

Are you for hire? Would you be willing to work very small contract jobs?

It would depend on the job. Scheduling around my condition is difficult. But the answer is yes.

Can you crosspost this to r/NeverBrokeABone?

I have no idea how to do that. I've never had a Reddit account before today.

Tory who?

Smith who?

If cheesecake is a cake, why does it have a crust? If cheesecake is a pie, why is it called a cake?

It is neither cake nor pie. It isn't topped with pastry, so it can't be a pie. It's a tart.

If the average novel is between 70,000 to 120,000 words, how fast do you think you could write a coherent novel? What would it be about?

I'd say about 6 hours. I'm really not sure, I have interests in so many different fields. Activism, research of the universe and the Great Filter theory, the Fermi Paradox/Drake Equation.. Record-breaking hurricanes every year.. There's so many topics it would be incredibly difficult to choose one.

I’m an avid reader, so my questions revolve around that. Have you considered writing a memoir? Are there any books which are special to you and why? Do you have any reading recommendations, genre doesn’t matter?

All of Stephen Hawking's work is brilliant.. Michael Pollan "How to change your mind" is a good read as well.

How do you take care of your wrists?

I don't. Just hope that they don't break.

Hi OP,

Not sure I understand the correlation between being able to type super fast and your specialization in preventing DDOS attacks. Can you help me understand how typing fast is particularly good for preventing DDOS? Thanks

During an active DDoS, you want to identify the country of origin and things of that nature as quickly as possible. My eidetic memory combined with typing speed allows me to quickly memorize the IP addresses and subnet ranges and flag down the country of origin to implement geo-blocks quickly.

Can you post some videos of you smoking people on the typeracer game?

I don't see why not!

My PT recently recommended that I get scanned to test for a Chiari malformation. Which of your symptoms are due to that? Ive been having unexplained pain in my arms for a while so he was speculating that that could explain it partially.

Random neuropathy pain in limbs, which is often an unexplainable sensation, is very much a Chiari symptom. Get a simple CT Scan

What keyboard setup are you using?

I only ever use laptops. My current model is a MSI GL63 9SDK, great key rollover.

Do you ever tell people you have glass bones and paper skin?

Absolutely. I love that episode.

Did you know Your typing ability is a very valuable and marketable skill? Legal transcription is very in demand and pays well. If you’re at all interested in this type of work there are many who would help you get into it and I’d be happy to point you in their direction.

I have done some transcription work and do have Inqscribe. Unfortunately, with the improvement of AI most companies now use very cheap services. We're talking like 5-10 cents per transcription.

Are you spiritual at all? Namaste.

I do believe in an afterlife of sorts as I've had several near death experiences that I cannot chalk up what I witnessed to mere chemical floods in the brain. I do meditate and would consider myself spiritual but certainly not religious.

The lives of both Jesus Christ and Siddhartha Gautama were both entirely devoted to ending the pain and suffering that is a byproduct of being a sentient being from conception. I wish you the best future. Have you ever attempted computer programming?

Yes, one of the videos I attached has a news reporter and I discussing it.

How would you recommend someone with little to no experience in computer science to start learning about the cyber world? And follow that up with what's something that most programmers lack that is really important to become a good programmer?

Learn about just how dangerous computer viruses can be first: I'd recommend watching the Infographics video on Stuxnet. Most programmers lack true motivation and give up if they see a line of code in the wrong place. I'm more of a networking guy, making sure all of the OSI models are secure from Layer 3, 4&7 DDoS attacks.

Were you wheelchair bound from early childhood or did that come after repeated injuries?

Have you ever played Mass Effect and if so what do you think of the character Joker?

I was wheelchair bound from early childhood. I could walk unaided a bit until I was 5 or 6 until the femur and tibia breaks started piling up more and more.

I've never played Mass Effect :(

What are some songs have you memorized upon first hearing? Do you have a favorite song?

Oh man, the list is endless. Mannequin by Pop Smoke, Rockstar in his prime by Juice Wrld, I spoke to the devil in Miami by XXXtentacion, All Of Me by John Legend, an original song by Kai the hitchhiker who is now serving a life sentence for killing a man who was sexually assaulting him with a kick to the head.. Too many to name.

Is syrup a sauce?

Yes, Syrup is a sauce and Mayonnaise is an instrument.

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I was never really into Fortnite, it isn't my style of game. I use to put countless hours into League Of Legends, as well as Tekken and occasionally Rust. I've done a lot less gaming and a lot more watching Youtube/Netflix over the last year or two.

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Oh and the question. What kinds of hobbies do you have? What do you do for fun?

The original comment was removed by a moderator, so I'm not sure what was asked.. I spend the majority of my time between Discord&learning as much as I can through Youtube documentaries as well as Netflix/Hulu. If I'm not watching something, I'm probably tower diving people on Leblanc in League of legends.

Have you ever been in any typing competitions? 220 is nuts and I think you stand a very good chance

Yes, I've participated in many online typing competitions on various websites. Typeracer, Keymash which has a ranked system and you are 1v1 in a best of 5, Monkeytype, I frequently won all 10fastfingers tournaments before I learned what kind of people the moderators were and stopped using the website.

I recently was assigned the Burst God role for getting 257WPM on a 10 word burst test on Monkeytype.

Are you related to Hunter Schaffer (the cutie that is in Euphoria tv-series)?

I am not. No C in my last name, Syracuse was going to make an elongated article and a much longer video than the one attached but the journalist moved away so they got the short video up in a rush and misspelled my surname. Worked out though, as it got the attention of the NY Times.

Would you be willing to try another kind of keyboard layout? I highly recommend the Colemak keyboard layout. Its most similar to qwerty and the NM keys are relatively close to each other. most letters are along the home row and you dont have punctuation in weird places like in Dvorak

I'm familiar with a few Colemak typists, but at this point in my life my muscle memory is so ingrained into Qwerty I can't imagine making a full switch to anything else.

What's your favourite sandwich?

Not much of a sandwich guy.. Overall calorie consumption is pretty low. Rice, various pastas&Dr Pepper are 90% of my diet

Hey, hope you're comfortable

Can you tell me how you get into security/hacking? Cause that sounds pretty cool

Far from comfortable, have been awake for about 30 hours. I spent all of my time as a kid on the computer, started with IRC rooms and just kind of kept progressing. My life has always been a digital one.

What are some of your deepest secrets?

What are the deepest secrets you’d like to know?

I don't really have any secrets. I'd like to have the entire ocean 100% explored and fully understood by our species, and the universe as well.

Some kinds of chiari malformation have been associated with ME/CFS as well. Do you experience any ME/CFS-like symptoms, like post-exertional malaise (feeling ill after exertion, usually after going beyond one’s exertion tolerance limit?

I have Long Covid with ME/CFS-like symptoms, so that’s why I’m interested in this.

It's hard to say as with my condition I very rarely am physically exerting myself unless absolutely necessary(I can stand for short periods if there's things near me to grab onto) I would say yes to an extent though.

How many hours per week do you surf porn?

In your opinion, what is the best amateur porn site?

Literally zero. I don't watch porn. Better things to do with my time, especially as I have no idea when the brainstem is going to kill me.