Table of Contents
Part I: The Battlefield – My Losing War with Progressive MS
Introduction: The Warrior in the Mirror
My name is Alex, and for the last 15 years, I have been living with Primary Progressive Multiple Sclerosis (PPMS).
I remember the day of my diagnosis with a chilling clarity.
The neurologist’s words were clinical and detached, but they landed like a declaration of war.
In that sterile, quiet room, I made a silent vow: I would be a warrior.
I would fight this disease with every ounce of strength I possessed.
This “warrior” identity became my armor.
It was the narrative I clung to, the one our culture celebrates—the brave patient battling their illness, the hero fighting against the odds.
It felt noble, empowering even.
I would not be a victim; I would be a conqueror.
This instinct to fight is a common one.
In online forums and personal stories, you see this spirit everywhere—people determined to “get on with things,” to “never stop fighting”.1
It’s a powerful, motivating force in the beginning.
For me, it was everything.
But as the years wore on, I came to realize a devastating truth: in the specific war against Primary Progressive MS, the warrior always loses.
The very act of fighting was not only failing to win the war, it was burning the battlefield to the ground.
An Enemy Without Weakness: The Clinical Reality of PPMS
My first years were a flurry of combat.
I pushed through every symptom, researched every experimental treatment, and scoured medical journals for a weakness in my enemy’s defenses.
I was looking for an opening, a pattern, a moment when the disease would retreat so I could regroup and reclaim lost ground.
That moment never came.
The horrifying truth about PPMS is that it doesn’t play by the rules of a conventional battle.
It is an enemy that never retreats.
Unlike the more common Relapsing-Remitting MS (RRMS), which accounts for about 85% of initial diagnoses, PPMS is defined by its relentless nature.3
From the very beginning, it is characterized by a steady, gradual worsening of neurological function.5
There are no attacks followed by periods of recovery, no relapses and remissions.7
There is only a slow, grinding advance.
This clinical reality completely dismantles the “battle/recovery” cycle that a warrior narrative depends on.
You can’t win a battle when the enemy only moves forward.
This reality is compounded by several other frustrating factors that make the “fight” feel futile:
- A Delayed Diagnosis: The diagnostic criteria for PPMS require a minimum of one year of continuous disease progression, making it take much longer to diagnose than RRMS.5 For years, like many others, I struggled with strange symptoms—a dragging foot, a tightness around my chest that I later learned was the “MS hug,” and a profound fatigue—while doctors dismissed my concerns or offered other explanations.1 Fighting an enemy you can’t even name is a uniquely maddening experience.
- A Targeted Attack on Mobility: While MS can affect any part of the central nervous system, PPMS has a tendency to feature more lesions on the spinal cord than in the brain.5 This means that problems with walking, balance, and mobility are often the most prominent symptoms, striking at the very core of a person’s physical autonomy and sense of strength.5
- The Treatment Gap: This was the hardest truth to accept and the one that ultimately broke my warrior spirit. The medical arsenal for fighting PPMS is devastatingly small. While there are more than 20 disease-modifying therapies (DMTs) approved for relapsing forms of MS, there is currently only one FDA-approved DMT specifically indicated to treat PPMS: ocrelizumab (Ocrevus).5 And even this treatment offers only a modest benefit, showing a 24% reduction in the risk of disability progression over a placebo in clinical trials.12 It tends to be most effective for younger patients who still show signs of active inflammation on MRI scans, a feature that is less common in the primarily neurodegenerative process of PPMS.13
This “treatment gap” creates a profound psychological trap.
We are handed a powerful cultural script—”fight your disease”—but are given almost no weapons to fight with.
The result is not just a physical decline, but a crisis of strategy and spirit.
You begin to feel like a failure, not just because your body is changing, but because your entire approach to the illness is proving to be a catastrophic miscalculation.
You are a warrior with no sword, shouting into a storm that will not yield.
The Crash: My Pyrrhic Victory
The moment my warrior narrative shattered came on the day of my cousin’s wedding.
I was determined to be there, to dance, to celebrate, to be “normal” for one night.
For weeks, I had been feeling the familiar drag in my left leg, the bone-deep fatigue that felt like walking through wet cement.
My body was sending clear signals, warning that my resources were low.
But a warrior doesn’t listen to warnings; a warrior pushes through.
And I did.
I pushed through the pain, the spasticity, the exhaustion.
I stood for the ceremony, I mingled during the reception, and I even made it onto the dance floor for one slow song, leaning heavily on my partner.
In the moment, it felt like a victory.
I had defied my illness.
I had won.
The price of that “victory” was catastrophic.
The next morning, I couldn’t get out of bed.
The fatigue was a physical weight, pinning me to the mattress.
The pain in my legs was electric.
It took me more than two weeks to recover to my pre-wedding baseline, and in truth, some of the function I lost in that crash never fully returned.
That one night of “winning” had cost me months of functional capacity.
Lying in bed, defeated and broken, I finally understood.
This was not a war I could win through force of will.
The “enemy” wasn’t an external invader I could vanquish; it was the operating system of my own body.
And by fighting it, by pushing it past its breaking point, I wasn’t defeating it.
I was just breaking myself.
My strategy was wrong.
The warrior had to die.
Part II: The Epiphany – From Battlefield to Control Room
A Glimmer of Light from an Unlikely Place
In the despair that followed my post-wedding crash, I felt utterly lost.
The warrior identity that had sustained me for so long was gone, leaving a vacuum of helplessness.
If I couldn’t fight, what could I do? Surrender? The thought was terrifying.
It was during this dark period, while aimlessly scrolling through articles online, that I stumbled upon a concept from a field I’d never heard of: resilience engineering.
The articles weren’t about medicine or health.
They were about how engineers manage incredibly complex systems like power grids, air traffic control, and nuclear power plants.15
The language was different from any medical or self-help advice I’d ever read.
It wasn’t about eliminating threats or achieving perfection.
It was about designing systems that could function effectively
despite inevitable disruptions and surprises.
It was about anticipating disturbances, building in adaptive capacity, and learning from what goes right, not just what goes wrong.15
The goal wasn’t to prevent every failure, because in a complex system, that’s impossible.
The goal was to sustain required operations—to keep the lights on, to land the planes safely.
The goal was to
not fail catastrophically.
A switch flipped in my brain.
For the first time in years, I felt a flicker of something that wasn’t anger or despair.
It was curiosity.
What if my body, my life with PPMS, wasn’t a battlefield? What if it was a complex system? And what if I could stop being a failed warrior and start being a systems engineer?
The Power Grid and the Forest Fire: A New Analogy for Life
This shift in thinking gave me a new, powerful analogy that changed everything.
My old “warrior” mindset was like trying to fight an unpredictable, sprawling forest fire.
The fire (PPMS) was the enemy.
My job was to extinguish it.
But the fire was too big, too unpredictable.
It would flare up without warning, jump fire lines, and smolder underground only to re-emerge elsewhere.
Trying to fight it head-on was exhausting, reactive, and ultimately, a losing proposition.
The fire was going to burn.
The new “resilience engineer” mindset was like managing a city’s power grid.
The goal isn’t to stop thunderstorms from happening.
Storms (symptom flares, unexpected progression, life stressors) are an inevitable part of the operational environment.
The engineer’s job is to design and manage the grid so that it can withstand the storm.
They build in redundancies, install surge protectors, create systems to reroute power, and have backup generators on standby.
Their goal is not to defeat the storm, but to ensure that no matter how hard the wind blows or the lightning strikes, the city’s lights stay on.
The goal is to maintain function.
This analogy is built on the core principles of resilience engineering, which map perfectly onto the lived experience of a progressive chronic illness:
- Acknowledge Inevitable Surprise: The field accepts that some failures are “literally inconceivable” before they happen.16 This perfectly describes the unpredictable nature of MS. A new symptom can appear overnight for no discernible reason. Acknowledging this shifts the focus from preventing the impossible to preparing for the inevitable.
- Focus on Function, Not Perfection: The goal is to “sustain required operations” under all conditions.17 This was a revolutionary idea for me. It meant my goal was no longer to be “cured” or “symptom-free.” My new goal was to live a full, meaningful, and joyful life—to keep my personal “city” functioning—even with the storm of PPMS raging around me.
- Be Proactive, Not Reactive: Resilience engineering is about anticipating and preparing for disruptions, not just reacting to them after they cause a blackout.19 This meant I had to stop waiting for a crash to happen and start designing my life to be more robust from the outset.
This paradigm shift did something profound: it moved the locus of control.
As a warrior, my sense of control was external, dependent on doctors and the hope for a miracle drug that never materialized.12
This led directly to feelings of helplessness.
But as an engineer, the control became internal.
The disease was the environment, but
I was the one designing and managing my personal system—my body, my mind, my home, my schedule.
I couldn’t control the storm, but I had immense power over the design of my grid.
And that was the most empowering feeling I’d had since my diagnosis.
Table 1: The Warrior vs. The Resilience Engineer Mindset
To make this shift concrete, I created a table that I kept on my desk.
It became my daily reminder of the new operating system I was trying to install.
| Feature | The Warrior Mindset | The Resilience Engineer Mindset |
| Core Metaphor | Battlefield | Control Room / Power Grid |
| Primary Goal | Defeat the Disease | Sustain Quality of Life |
| View of Symptoms | Enemy Attacks | System Disruptions / Power Surges |
| Response to Setbacks | Fight Harder / Sense of Failure | Analyze Data / Adapt the System |
| Use of Tools (e.g., a cane) | Sign of Weakness / Defeat | Engineering Upgrade / Redundancy |
| Source of Control | External (Doctors, Drugs) | Internal (System Design, Management) |
| View of Rest | A Tactical Retreat / Giving In | Essential Maintenance / Recharging |
| Identity | Patient / Fighter | Chief Engineer / System Manager |
Part III: The Resilience Engineering Playbook: A New Operating System for Life with PPMS
Adopting a new mindset is one thing; putting it into practice is another.
I needed a playbook, a set of practical, actionable strategies based on my new “power grid” analogy.
I structured my approach around four key pillars of resilience engineering: Proactive Monitoring, Engineering Robustness, Cultivating Adaptive Capacity, and Mastering Strategic Trade-offs.
This became my new operating system for life.
Pillar 1: Proactive Monitoring — Building Your Personal Dashboard
My first act as an engineer was to stop flying blind.
A power grid operator would never manage their system without a control room full of monitors and real-time data.
I needed my own dashboard.
In the past, I only paid attention to my body when something went wrong—when the pain was screaming or the fatigue was crushing.
This is a reactive approach, like only looking at the grid after a blackout.
Resilience engineering teaches that you must learn from normal, everyday operations to understand how your system works well.15
The most transformative tool I found for this was the Spoon Theory.
Created by Christine Miserandino to explain her experience with lupus, the theory uses spoons as a metaphor for the finite amount of physical and mental energy a person with a chronic illness has each day.21
A healthy person might wake up with a seemingly unlimited supply of spoons.
I wake up with, say, 12.
Every single action costs spoons:
- Getting out of bed: 1 spoon
- Showering and dressing: 3 spoons
- Making breakfast: 2 spoons
- Driving to a doctor’s appointment: 4 spoons
Suddenly, the vague, oppressive concept of “fatigue” became a quantifiable resource to be managed, like megawatts in a power grid.
I started keeping an energy log, not just for a day, but for weeks.22
This wasn’t about judgment; it was about data collection.
I learned that a 20-minute phone call with a difficult relative could cost as many spoons as a physical therapy session.
I learned that 30 minutes of quiet reading could actually
give me a spoon back.
This practice aligns perfectly with the principles of chronic illness self-management, which emphasize daily monitoring, problem-solving, and action planning.23
But the resilience engineering frame added a crucial twist.
Traditional symptom tracking is a form of monitoring for failure (“What made me feel bad?”).
I flipped the question.
I started monitoring for
success.
The question became, “How did I manage to attend my child’s school play and still have two spoons left for reading before bed?” This subtle shift, inspired by the RE principle of learning from what goes right, transformed self-monitoring from a depressing catalog of my body’s failures into a proactive search for effective strategies.
It was no longer a diary of the war; it was the operational log of my power grid.
Pillar 2: Engineering Robustness — Installing Your System’s Shock Absorbers
With data from my dashboard, I could clearly see the “brittle” parts of my system—the activities and environments that consistently caused energy drains or failures.
The next step was to engineer robustness.
In a power grid, this means adding buffers, redundancies, and shock absorbers to handle stress.
In my life, it meant making strategic “hardware upgrades” to my body and my environment.
This is where I had to confront my old warrior mindset head-on, especially regarding assistive technology (AT).
The warrior in me saw using a cane, and later a walker or scooter, as a sign of defeat.
It was a visible symbol that the disease was winning.
The engineer, however, saw it differently.
A cane wasn’t a white flag; it was a system upgrade.
It was a piece of carbon-fiber engineering that reduced the load on my leg muscles, improved my stability, and lowered the “spoon cost” of walking, thereby preserving energy for more important tasks.
This reframe was liberating.
I began to embrace a wide range of AT, from simple grab bars in the shower and long-handled shoe horns to a lightweight scooter for trips to the museum.24
Personal stories from others with MS often reflect this journey from initial resistance to eventual gratitude for the independence these tools provide.24
The ultimate robustness upgrade was transforming my house into a Smart Home.
With devices like an Amazon Echo, smart plugs, and a smart thermostat, I could control my environment with my voice.26
- “Alexa, turn on the living room lights.” (Saves 1/2 a spoon)
- “Hey Google, set the temperature to 70 degrees.” (Saves 1/2 a spoon)
- Using an app to preheat the oven from the couch. (Saves 1 spoon)
These might seem like tiny savings, but over the course of a day, they add up, leaving more energy in my reserves for things that truly matter, like playing a game with my kids or having a meaningful conversation with my partner.
This technology gives a person with mobility and fatigue challenges profound control over their environment, fostering a sense of independence and safety.26
Finally, I engineered robustness into my body itself through adaptive exercise.
The warrior had tried to force his body into old, high-impact routines, leading to injury and exhaustion.
The engineer found new, smarter ways to build strength.
I discovered the magic of aquatic therapy, where the buoyancy of the water supports weak limbs and allows for a greater range of motion with less effort and less risk of overheating.29
I started practicing
adaptive yoga, with poses modified to be done in a chair, focusing on flexibility and breath control.29
I invested in
TheraBands for resistance training at home, which put less strain on my joints than traditional weights.29
Each of these upgrades—the cane, the smart speaker, the pool workout—was a deliberate engineering choice.
It required me to redefine “independence.” The warrior believed independence meant doing everything myself, unassisted.
The engineer understands that independence means achieving the desired outcome with maximum efficiency and minimum system stress.
Using a scooter to get through the grocery store isn’t a failure of independence; it’s a brilliant strategy that ensures the system has enough power left to cook the dinner.
It is the ultimate expression of taking charge.
Pillar 3: Cultivating Adaptive Capacity — Upgrading Your Ability to Pivot
No matter how robustly I engineered my physical world, I knew PPMS would always be a source of surprise.
A day could start with 12 spoons and be reduced to 4 by a sudden wave of nerve pain or an unexpected emotional stressor.
I couldn’t build a physical wall high enough to stop these surprises.
Therefore, the third pillar was about upgrading my internal system: my mind.
I needed to cultivate adaptive capacity—the ability to pivot and adjust my functioning when faced with the unexpected.17
This was about installing new mental and emotional software.
Two therapeutic models became the core of my software upgrade: Acceptance and Commitment Therapy (ACT) and Mindfulness-Based Stress Reduction (MBSR).
The “warrior” approach to painful thoughts and feelings is to fight them, suppress them, or argue with them.
This is exhausting and ineffective.
ACT offers a radically different approach.
Its goal is not to eliminate pain or negative thoughts, but to increase psychological flexibility so you can live a rich, full life even in their presence.31
ACT taught me three critical skills:
- Acceptance: This isn’t resignation. It’s the active process of opening up and making room for painful sensations and emotions without struggling against them.32 I learned to stop wasting energy fighting the reality of my pain and fatigue. It is here. Fighting it only adds a second layer of suffering.
- Cognitive Defusion: This is the ability to step back and observe my thoughts without getting entangled in them.32 When the thought “I am useless” would arise, instead of believing it or fighting it, I learned to say, “I am having the thought that I am useless.” This simple shift creates space. The thought becomes just an event in my mind, like a cloud passing in the sky, not a fundamental truth about me.
- Values-Based Action: ACT constantly asks, “Given the reality of your pain, what truly matters to you? What kind of person do you want to be?”.31 It then encourages you to take small, committed actions in the direction of those values. Even on a day when my pain was high, I could still take a “valued action,” like spending five minutes reading to my child, which aligned with my value of being a present father. This kept me moving forward, no matter how small the steps.
MBSR was the perfect complement.
It is a form of mental training that cultivates moment-to-moment, non-judgmental awareness.33
Through daily practices like mindful breathing and body scans, I trained my attention to stay in the present.
This was crucial because, like many with chronic illness, I spent so much mental energy living in an anxious future (“What if I can’t walk next year?”) or a grieving past (“I miss being able to R.N.”).
Research specifically on MS has shown that MBSR can significantly reduce stress, fatigue, anxiety, and depression, and may even be associated with positive structural changes in the brain.34
In the past, I would have dismissed these practices as “soft” coping skills.
But through the lens of resilience engineering, I saw them for what they are: deliberate, high-impact upgrades to my system’s central processor.
They are engineered capabilities.
ACT is the advanced operating system that allows the system to function smoothly even when receiving error messages (pain/negative thoughts).
MBSR is the diagnostic software that keeps the processor from getting bogged down by useless background processes (anxiety/rumination).
Together, they gave me the adaptive capacity to handle any storm the environment threw at me.
Pillar 4: Mastering Strategic Trade-offs — Becoming the Chief Resource Officer
The final and most advanced pillar of my new system was learning to think and act like the Chief Resource Officer of my own life.
A warrior tries to win on all fronts, to say “yes” to every battle.
A systems engineer knows that every action has a cost and that success in a complex system with limited resources depends entirely on making wise, strategic trade-offs.16
My primary resource was energy, as quantified by my spoons.
Energy conservation became my core strategy for resource management.
This was more than just resting; it was a series of conscious decisions made throughout the day 36:
- Prioritize: What are the 1-3 most important things I need to accomplish today? Everything else is secondary.
- Plan: How can I sequence tasks to be more efficient? I lay out my clothes the night before. I gather all ingredients before I start cooking.
- Pace: I work at a steady pace and take scheduled breaks before I feel tired. A five-minute rest can prevent a two-hour crash.
- Position: I sit to chop vegetables. I use a stool in the shower. I organize my kitchen so the most-used items are at waist level to avoid bending and reaching.
This led to a profound re-evaluation of my social support network.
The warrior saw asking for help as a weakness.
The engineer sees it as strategic delegation.
My family and friends are not just sources of emotional comfort; they are a vital part of my resilient system.38
I learned to ask for specific help: “Could you grab that item from the top shelf for me?” or “Would you be willing to drive to the pharmacy this week?” Each task delegated is energy preserved for my highest priorities.
Finally, mastering trade-offs required a philosophical reframing.
I had to trade my old identity for a new one.
I had to let go of the idea that success meant a high-powered career and a physically active life.
I had to redefine success in ways that were meaningful and possible now.40
This is where the values work from ACT became so critical.
My value wasn’t “being a hiker”; it was “experiencing nature.” I traded multi-mile hikes for sitting on a park bench, paying deep, mindful attention to the feeling of the sun on my face.
My value wasn’t “being a successful executive”; it was “contributing my skills.” I traded a 60-hour work week for a few hours of remote consulting, which was more manageable and just as fulfilling.
This was the ultimate expression of control.
The warrior feels obligated to say “yes” to every challenge to prove he’s still in the fight.
The engineer understands that the most powerful tool for system stability is the word “No.” Every “no” to a low-value, high-energy demand is a strategic “yes” to a high-value, mission-critical activity.
It transforms the guilt-ridden “I can’t” into the empowered, deliberate “I am choosing not to, in order to preserve my resources for what truly matters.”
Table 2: Your Personal Resilience Engineering Toolkit
This table became my go-to resource, a practical summary of the tools I used to implement my new operating system.
It’s a starting point for anyone looking to become the chief engineer of their own life.
| Pillar 1: Proactive Monitoring | Pillar 2: Engineering Robustness |
| Tools & Practices: – Daily Spoon Theory Log – Symptom & Success Journal (Apps like My MS Manager) – Daily Mindful Body Scan Practice – Regular check-ins on mood & stress levels | Tools & Practices: – Assistive Tech: Canes, walkers, scooters, orthotics – Smart Home: Voice assistants (Echo, Google Nest), smart plugs, smart lighting, smart thermostat – Adaptive Exercise: Aquatic therapy, chair yoga, recumbent bikes, TheraBands – Home Mods: Grab bars, ramps, anti-fatigue mats |
| Pillar 3: Cultivating Adaptive Capacity | Pillar 4: Mastering Strategic Trade-offs |
| Tools & Practices: – ACT Principles: Practice Acceptance, Cognitive Defusion, and identifying Values – MBSR Techniques: Mindful breathing, guided meditations (Apps like Headspace, UCLA Mindful) – Therapy: Seek professionals trained in ACT/CBT for chronic illness – Journaling: Write about difficult emotions without judgment | Tools & Practices: – Energy Conservation: The 4 P’s (Prioritize, Plan, Pace, Position) – Social Support Map: Identify key people for specific types of help (practical, emotional) – Values Clarification Worksheet: Write down your top 3-5 life values – Practice Saying “No”: Strategically decline low-value requests to protect energy for high-value activities |
Part IV: The Resilient Life
My Life as a Systems Engineer
Last summer, my family wanted to take a week-long trip to the beach—the kind of trip that would have been unthinkable for the warrior.
The old Alex would have seen it as an impossible series of battles: the long car ride, the walk across the sand, the noisy restaurants, the pressure to be “on” all day.
He would have either refused to go, defeated before he started, or he would have gone, fought through it, and spent the entire trip in a state of pain and exhaustion, inevitably leading to a major crash.
The engineer approached it differently.
It was a complex operational challenge that required a plan.
- Monitoring: Weeks before, I tracked my spoon counts meticulously, ensuring I had a surplus of energy going into the trip. I knew the car ride would cost at least 6 spoons, so I planned for a full day of rest before and after.
- Robustness: I didn’t just bring a cane; I rented a beach wheelchair. It was a fantastic piece of engineering that allowed me to get right to the water’s edge without spending a single spoon on the treacherous sand. Our rental house was equipped with a few smart plugs I brought from home, allowing me to control a fan and a reading light from bed.
- Adaptive Capacity: On the third day, I woke up with a familiar buzzing in my feet—an unexpected system alert. The warrior would have panicked, seeing it as an attack. The engineer acknowledged it, did a 10-minute mindfulness meditation (using my MBSR training), and accepted the sensation without letting it ruin the day. I recognized it was a signal that my system was under stress.
- Trade-offs: Because of that signal, I made a strategic trade-off. The family was planning a big dinner and a walk on the boardwalk that evening. I knew that would be too much. I chose to have a quiet dinner at the rental house and rest, preserving my energy. I said “no” to the boardwalk so I could say “yes” to the main event the next day: watching my kids build a sandcastle, fully present and joyful.
The trip was not a “victory.” It was something better.
It was a success.
I participated, I found joy, and I came home with my system intact, no crash required.
I had sustained operations.
The lights in my city stayed on.
Conclusion: You Are the Chief Engineer
Living with a progressive illness like PPMS is one of the most profound challenges a person can face.
The instinct, encouraged by our culture, is to frame it as a war.
But this is a trap.
A war against your own body is, by definition, unwinnable, and the framework itself guarantees a sense of failure and despair.
The journey from warrior to engineer is not easy.
It requires letting go of old identities and deeply ingrained ideas about strength and independence.
But the destination is a place of profound agency and quiet power.
By shifting your perspective, you can move from a state of helpless reaction to one of skillful, proactive management.
You cannot control the storm of this disease.
You cannot stop its progression with sheer will.
But you are not powerless.
You have a complex, unique, and remarkable system to manage.
You can learn its patterns.
You can upgrade its hardware and software.
You can build in buffers and redundancies.
You can make wise, strategic decisions about how to allocate its precious resources.
You are the person who knows this system best.
You have more data than any doctor.
You are the one in the control room, 24 hours a day.
The path forward is not to fight a war you cannot win.
It is to embrace your new role with courage and intelligence.
You are the Chief Engineer of your life.
Now, pick up your toolkit and get to work.
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