Mindset
The art of being present with what I can't control
Mindset is the hardest pillar to quantify and the easiest to dismiss. It's also the one I found most irreplaceable.
In October 2020, I found myself in a wheelchair dealing with severe trigeminal neuralgia — an MS-related pain condition that feels like biting into a high-tension electric wire. TN is sometimes called the suicide disease, not as hyperbole but as clinical observation of what unrelenting lightning bolt pain does to people. I understood, in that time, exactly how it earned that name. It had left me unable to speak or eat solid food. My neurologist told me the surgery would likely kill me. When the heavy-duty meds didn't touch the pain, the situation looked bleak.
Diet hadn't prevented it. Three years of disciplined eating didn't stop TN from happening. Exercise hadn't prevented it either. What finally moved the needle was something operating at a different level entirely — a shift in how I was relating to the experience, not just managing its symptoms.
That's what the mindset pillar is actually about.
MS is a disease wrapped in a particular kind of psychological cruelty. Two layers of uncertainty pull in opposite directions. The first is pure chaos — no one can say what happens next. MS doesn't run on a schedule or algorithm.
The second is the opposite: a presumed certainty. Things will get worse. The wheelchair is a boogeyman just outside the door. We're drawn to certainty, even when it looks bad. I find people are often more afraid of false hope than false doom. Pessimism can feel like a smart survival skill.
Living between radical unpredictability and presumed decline can produce exactly what you'd expect: profound anxiety and depression.
And here's the part that matters mechanically, not just emotionally — anxiety and depression are pro-inflammatory. In an inflammatory disease, they don't just make life harder. They feed the condition itself. The fear of the monster in the room can accelerate what the monster does to you.
That's not a metaphor. That's cortisol. That's microglial activation. The mind game isn't separate from the biology — it's upstream of it.
There's another way to hold the uncertainty itself. Most people treat an unknown future as a threat to be braced against. But uncertainty doesn't have a polarity until one is assigned. The same unknown that could mean progression could mean remission. The same unpredictability that makes MS frightening is what makes unexpected recovery possible. It only becomes one or the other when I collapse it into a verdict.
There's something almost quantum about this.
The moment I decide the unknown future is probably bad, I've made a choice — not a discovery. For me, learning to hold uncertainty without immediately filing it under threat has been one of the most practical shifts in this entire process. If I don't know what's coming, I don't have to assume the worst. I can leave the possibility space open — and if I can arrive at a place where I genuinely trust that whatever comes will be workable, the uncertainty stops being something to endure and starts being something closer to neutral ground.
That's not the same as not caring. It's refusing to suffer before I have to, over something that hasn't happened yet.
This isn't positive thinking. It's not a better attitude or a decision to look on the bright side. In practice, it can mean comfortably holding hope and hopelessness in the same hand, and seeing both as possible outcomes. It also includes the recognition that what looks good or bad to me in the moment has often turned out to be the opposite over time.
What I've found useful is closer to what the Stoics called distinguishing what is up to me versus what isn't — the capacity to remain stable in the presence of what cannot be named or changed. Not detachment. Not giving up. Full presence, without being consumed.
That state has a name across many traditions — prayer, meditation, contemplative practice, plant medicine. The specific door matters less than where it opens. The through-line is the same: arriving at a place where the story I'm telling about my condition loosens its grip enough that I can be present with the actual experience, rather than the narrative of dread wrapped around it. It loops, for me, between the deeply personal and something that feels larger than personal. I haven't fully mapped it. I'm not sure it can be mapped.
I still have facial pain. The trigeminal neuralgia threat hasn't disappeared. I know that. I don't run from it. I try to sit with the fact that it's in the room, that it might swipe at me again, and that being terrified of it makes it more likely, not less.
That's the practice.
Not pretending the monster isn't there. Not accepting it like a passive victim. Just not letting the fear of it drive the bus.
There's another version of this worth naming. The MS community has a well-worn tradition of rage — FUMS is practically a bumper sticker. And I understand it. Anger and grief are real, and early on they can be fuel. They were for me. When I was first diagnosed, I was all about overpowering MS — meet force with force, refuse to yield, outwork the disease.
I still believe in that energy. I just stopped drinking it.
Anger is gasoline. It can power the engine, but soaking in it corrodes everything it touches. What I've moved toward over time is something closer to a martial arts principle — working with the energy of MS rather than against it. Not surrendering to it. Not pretending it isn't coming. But not bracing into it headfirst either. Finding the angle where its momentum becomes mine.
That's not a prescription for anyone else. Rage has carried people through things that nothing else could have. But for me, the fight framing eventually became its own kind of weight — and putting it down turned out to be part of the protocol too.
Perspective
I also find perspective to be a useful tool — one I can visit without having to live there. If I zoom out far enough, a few things become clear at once: I often can't reliably tell good from bad when I see it. I can't always control what happens anyway. And in the long arc of things, most of what feels urgent right now won't matter much at all. That combination — not knowing, not controlling, and not mattering in the cosmic sense — can be oddly relaxing. It's not resignation. It's permission to stop gripping so hard.
The evidence from my own life is hard to argue with. I've been genuinely thrilled at things that later fell apart, and genuinely devastated by things that turned out to be gifts. MS is on that list. It has been hard in ways I won't minimize. But I am a better human being for having lived with it — more attentive, more grateful, more present with the people around me. I wouldn't trade back the perspective, even if I could. That's not something I expected to be able to say. But it's true.
The rest of what goes into this — the specific practices, the role that grief and grace and radical honesty play — is more than a single page can carry. It's a subject I'll keep returning to, because it's the part of this protocol that is most personal, least reducible to data, and in some ways most important.
What I can say cleanly here is this: without the mind game, the diet and exercise and biomarker tracking would still be valuable. But they'd be running on a foundation with a crack in it.
Mindset isn't a pillar because it rounds out a list. It's a pillar because the other three don't hold without it.
