For over 10 years, every breath I take has been delivered by a machine. If it stops, I will die in a couple of minutes unless the nurse connects me to the backup machine. Same thing if a tube pops off. Or a mucus plug blocks my airways.
3600/24/7. Never let your guard down. Not even when sleeping.
Yet I sleep well, knowing that the nurse knows what to do if something happens. Practice doesn’t make one perfect, but it gives you confidence so that you don’t need to stress, even if you are well aware of the risk.
That is safety culture. The machine reminds me of it on every breath I take.
***
Many people don’t realize how much effort it takes to communicate by moving my eyes. This has been my only means of communication for over 12 years, so I’ve learned to express myself concisely.
Most people are understanding about this. Surprisingly, it’s often the nurses who complain about my “rudeness” for not using my limited daily character quota on small talk. If they spent just one day communicating this way, perhaps they would understand.
***
With a background in nuclear safety, I find myself in a strange position due to my breathing paralysis. I am now the one inside the system, dependent on it, with my life at stake with every breath I take.
What frustrates me the most is not the complexity of the situation; it is how close calls are handled.
“But nothing actually happened, right?”
That sentence would never be accepted in any serious safety culture. Because nothing happening is often just a matter of luck, timing, or a coincidence of margins that haven’t yet been exhausted.
Near misses are not non-events; they are important signals from the system before damage obscures the mechanism. If you dismiss them, you are not being practical; you are training the system to fail.
What I see far too often are:
Processes that rely on perfect human performance.
No recovery margin if something is missed.
Workarounds quietly becoming standard practice.
For instance, going outside for a smoke without considering the possibility of a tube coming loose. From the outside, it may look like nothing happened, but from the inside, it appears to be a failure that got lucky.
Smoking kills. Literally.
In my situation, I only get one bad day. There are no second chances.
Pointing this out makes me a “nitpicker.” So be it. Safety has always depended on those who refuse to normalize near misses.
Fatal “oopsies” are rarely sudden; they are close calls that accumulate, are dismissed, and then repeated—until one day, luck runs out.
***
I was 38 when I became completely paralyzed. Soon, I will turn 52.
People often say this must have been easier for me since I had always spent time in front of a computer. There is a small truth to that, but only a small one.
What they don’t see is that working with my hands was where I felt most at home. Building, repairing, and shaping something real—whether it was a house, an old machine, or something entirely new—was never secondary. It was the part that mattered most. Can you truly understand a nuclear power plant (NPP) if you haven’t crawled through its every pipeline?
I’m grateful I got to do all of that, but 38 is far too early for paralysis.
Losing the ability to physically do things cannot be offset by familiarity with screens. It is not a trade-off. There is no balance where one kind of life quietly replaces another.
Nothing softens that blow except for friends who, at times, have been willing to act as my hands. You know who you are. Thank you.
***
ALS did not take my life in a single moment; it took it piece by piece. What it took most completely was my freedom to make decisions about my own life.
From the outside, it may seem like I still have choices. There are routines, care plans, people coming and going, and decisions being made. But when your survival depends entirely on others, those decisions are no longer yours. They are filtered, negotiated, or simply made without your input.
At one point, I was physically separated from my wife and child—not as a decision I made or influenced, but as something that happened to me. It is not just about distance; it is the realization that the center of your life can be moved without your consent. The place where your life actually exists is no longer where you are.
From there, the losses become quieter but are just as total. There is no real privacy. Someone is always present, and there has to be, but that does not make it easier. The ability to be alone, to decide who enters your space and when, simply disappears. I don’t even have a real say in who my nurses are, even though they are part of the most intimate aspects of my daily life. You adapt because you have no choice, but adaptation should not be mistaken for acceptance.
There is another layer to this that is rarely voiced. The only thing that seems to matter is the happiness of the nurses. If they are not happy and complain, the system reacts much faster to that than to anything I say. My role shifts to keeping things smooth instead of asserting what I actually want. It becomes a quiet inversion of priorities, where the person whose life this is has the least weight in shaping it.
When something is said about me, corrective actions are taken without even hearing my side. Decisions appear, changes happen, and I am expected to adjust. There is no real process where I am asked or where my perspective is treated as necessary before action is taken. In those moments, it is hard not to notice that even prisoners have a clearer right to be heard than I do in my own life.
This is what the loss of freedom looks like: not dramatic, not loud, but persistent and absolute. It is the steady erosion of the ability to shape your own life, replaced by a system that keeps you alive but does not truly belong to you.
That is why the internet matters.
The internet is the last place where I am treated as a person—not as a patient, not as a case, not as a schedule that needs to be managed, but as someone who still has a voice and a will. There, I can decide what to say and how to say it. I can choose when to engage and when to withdraw. I can think something through without interruption or choose silence without it being filled for me.
It may not be complete freedom, but it is real. In a life where so much has been decided for me, even a small space where I still make my own decisions is not a luxury; it is what remains.
***
In late 2013, a doctor estimated that I’d only have six months to live. It’s fair to say that I went into a denial mode for a few years, literally living one day at a time, spending all my free time searching for ways to slow down the disease. Eventually, progression stopped, and I was able to let go of the survival mode.
This has been quite a ride. If anything, it has taught me that no challenge is overwhelming. You just need to chop it into manageable subtasks and keep the big picture in the background. Beginning from the Great Pyramids of Egypt, the World is full of engineering wonders built by people who did not let themself be overwhelmed by the magnitude of the challenge.
Every major challenge requires a bit of stubborn denial.