Engineering Applied to Multiple Sclerosis – A Manifesto

Hi, my name is Jeff, and my wife, Effie, has multiple sclerosis. I want to state up front that this is a terrible disease that no one deserves. Most people will understand a cancer diagnosis, but MS is a life sentence of a constellation of odd things that require understanding how a faulty nervous system can just ruin a day. While there are common clusters of symptoms, it is a disabling condition in a variety of unfortunate ways. I say this because I am willing to give empathy to anyone with this condition, since no one deserves it.

That being said, I’m a hard-core, hyper-focusing jerk who sees life as a game, and I intend to win any game I try to play. I won big tech. I retired early. Now, I’m working on my wife as a project along with myself (fat guy). You may be thinking, “holy shit, what kind of abuse does this man inflict on this poor woman?” My wife is my wife because she has her own pathological issues and personality disorders, and when she got her diagnosis, she did a bunch of random things she found on the internet, like going gluten-free. She gets credit for walking through whatever crazy door I try to open for us, and she is 100% a willing participant in the crazy things we do. She is a good sport, so don’t worry about her.

I started this project as a way to lend some technical support to a support group for MS, but I’m evolving it into a place to capture all the research I’ve done and as a way to help me connect with other people suffering with MS. The key challenge I have is that my mindset does not apply to most people, and this is why this is a manifesto. I worry that if I define what it means to thrive with MS, it will be too high of a bar for most people. Now, my bar in life is too hard for people without a disabling condition, and I suffer for that bar constantly (cue the world’s smallest violin playing for the pity of an early retiree). So, what do I do? I’m going to bias towards sharing, because there will be a group of people who will rally, and the hardest aspect in life is biasing towards finding the right people rather than trying to make everyone happy.

So, I plan to share everything that we are doing from a personal perspective rather than some organizational authority perspective, since I simply can’t do that. If you have learned to be helpless, then our story will not be able to help you, since it is incompatible with my philosophy: I reject empathy as a virtue. Real empathy requires strategic sacrifice and action, and anything else is self-serving nonsense.

This was a revelation I had years ago, when I looked at my wife struggling and I went, “oh, poor Effie,” and I caught myself realizing I was failing her. Yes, my wife has a terrible disease that has to be managed, but she is also a human. Humans just fall apart, and the empowering thing is that you can slow down the decay in a multitude of ways. At the same time, I looked in the mirror and saw a fat piece of shit, and I realized I was failing myself as well.

This was a household without the shot caller. The voice of the tyrant was missing. The man of the house was too busy playing bullshit games. So, that became the new game: fix all the shit that was wrong, and I turned all my endeavors towards health. This meant turning my basement into a gym with a sauna, cold plunge, red light, and more. I went all out, and I’m all-in on our health.

Then, our house had a fire. I’m still rebuilding after this nonsense, but I’m still committed to excellence. I’m down 100 pounds, and the number of medications that Effie is off of is inspiring. To re-affirm that my wife isn’t a victim: as we spent a night at a friend’s house with literally only the new clothes we had just bought after losing everything, my wife told me, “we are going to get stronger after this.” My wife can be so hard-core at times that I just love it.

Now, I intend to cover many topics, but I want to emphasize that your life is entirely your own. You are an N=1 science experiment of your own. I am (generally) supportive of modern medicine, but modern medicine requires you to meet your doctors halfway with good nutrition, solid exercise, and good sleep. My approach simply isn’t right for everyone, and again, I know how hard MS is from watching my wife and watching others. The truly brutal aspect is how draining the disease is, so I can understand the urge to just give up. It is hard, but that’s the moment when most surrender, and I can’t tolerate surrender. It is incompatible with my mindset, but I also feel that this is a humbling disease. That is a thought that runs in the back of my head, but the future isn’t won by people who give up. It’s won by those who fight like hell despite failure after failure. You take shot after shot and never stop.

AND, we are entering the age of AI, and AI is going to eliminate all excuses. I am writing this manifesto personally, as a human, to remain authentic, since most of the content on this site is going to be generated by AI based on my research. I am building my own ecosystem to drive our health, but I will only share this with people I know in person who are willing to share everything with me in return (or have the technical expertise to run a Java server).

I believe the future is very bright. I see it with these machines doing amazing things, and by god, I hope everyone loses their jobs to machines so we have no excuses left to not eat right, sleep well, exercise, play board games, and enjoy doing what truly drives us. MS, as terrible as it is, is a technical problem of a complex system that we inherited without documentation. We, humans, are going to reverse engineer every biological system and solve every problem. That machine is being built, and it is a civilization bet. All of civilization is being bet, right now, on AI, so fight like hell to see the fruits unfold, or be strong enough to survive when it all comes crashing down.

The decision is ultimately in how we act every day.