Angry, Grateful, and Still Walking
The Trapdoor of a Number
I’m a little pissed.
Not shattered. Not hopeless. Not even exactly shocked. Just pissed in a clean, durable way. The kind that doesn’t flare and vanish, but stays put.
After nearly two years in a blinded study weighing Ocrevus against a BTK inhibitor, I got pushed out a few months before it was supposed to go open label. The reason was not dramatic. No catastrophic flare. No grand new complication. It was my bloodwork. More specifically, my ANC, my neutrophils. They dropped low enough that the study was no longer an option.
That was enough.
What makes it maddening is how ordinary the surrounding story was. I had pertussis a few months earlier. Then I got what seemed pretty clearly like the flu twice after that. I was not in some mysterious medical collapse. I got sick several times in a short stretch, my immune system looked bad on paper afterward, and the timing happened to be terrible. The study lab retested the sample and confirmed it. Once the number was real, the rest of the story became background noise.
I understand why trials work this way. Safety matters. Rules matter. You can’t run a study on intuition and sympathetic shrugs. Fine. I don’t want a reckless system. I don’t want researchers improvising around danger because someone tells a convincing story. Still, there is a difference between unsafe and unlucky, and living with MS seems to mean learning that difference over and over again whether you want to or not.
You can show up, comply, adapt, wait, tolerate uncertainty for months, and still lose your place because your body had a rough stretch at exactly the wrong time.
That kind of thing does not exactly inspire trust in the elegance of the process.
Measuring a Person too Narrowly
Then came the second act.
I screened for another trial, this one aimed at spasticity, which is one of the most stubborn and daily limiting parts of my MS. I trained for it. I stood longer. I walked more. I practiced the required twenty meters until it became less of a test and more of a grudge match. Then I showed up and did it.
Not beautifully. Not smoothly. But I did it.
I still failed screening.
This time it was because the difference between my sitting and standing blood pressure was apparently too large. That would already be annoying enough. What made it hard to swallow was what happened after: multiple nurses checked it manually and did not find the same issue. Maybe it resolved. Maybe it never existed in the first place and the automated machine just spit out a bad reading. I’m generally in favor of automated tools. I’m not trying to become one of those people who sees one glitch and decides every machine is the Antichrist. But, sometimes the device is wrong, or wrong enough to matter, and in this case that may have been all it took.
That is hard not to find stupid.
Everyone wants precision. Everyone wants clean thresholds, clean exclusions, clean numbers that sit still long enough to justify decisions. Meanwhile the body keeps behaving like a body—shifting, compensating, misfiring, settling, refusing to become as tidy as the chart would prefer. You can be genuinely different from one day to the next, or not different at all and simply measured badly once. Trials don’t always have room for that ambiguity.
Real life is basically built out of it.
Missing the Last Bus
Part of why the first trial exit bothered me so much is timing. BTK inhibitors keep sounding promising. Sanofi’s tolebrutinib showed a 31% delay in time to six-month confirmed disability progression in the HERCULES trial for non-relapsing secondary progressive MS, and Roche has been moving fenebrutinib through late-stage MS trials, including relapsing MS and primary progressive MS programs. Those are not small signals, even with the usual caveats, risks, and regulatory uncertainty.
None of that means BTK inhibitors are guaranteed to be the answer. I don’t think they are. Biology is too complicated for that, and MS has a long history of humbling anyone who gets too confident. Still, they seem serious. They seem alive. They seem like one of the more plausible near-future options, especially because they are aimed not just at the obvious immune activity in the bloodstream, but at immune processes that may matter inside the nervous system itself.
So, getting pushed out of that study just before it went open label felt a little like missing the last bus by three steps and then standing there watching it idle with the doors closed.
That may be melodramatic. It is also pretty close to how it felt.
I wanted the shot. I wanted clarity. I wanted to know what I’d been on and continue into the phase where the guessing stopped. Instead, I got removed over a neutrophil count that may well have reflected nothing more than a few minor illnesses arriving in a cluster. Then I turned around and failed another screen over a blood-pressure issue that may have been little more than a machine having a bad day.
At a certain point, the structure of all this starts to feel almost insulting. Not tragic in some grand literary sense. Just bureaucratically absurd. The sort of thing that would feel too convenient if you wrote it into fiction.
The Bleeding Edge
One of the things this year clarified for me is that I am not especially interested in caution for caution’s sake.
That does not mean I’m reckless. It does not mean I’ve decided the harsher the treatment, the nobler the choice. It means something simpler: I have a progressive disease, and I care more about preserving function than I do about looking moderate and reasonable from a safe distance.
If the most rational next step eventually turns out to be something more aggressive—CAR-T, engineered cells, some severe-sounding therapy that makes people raise their eyebrows—then yes, I want to look hard at it.
I’m willing to try the bleeding edge.
That phrase can sound dramatic, but I don’t mean it theatrically. I mean that I do not want my treatment philosophy to lag behind the seriousness of the disease itself. MS is already aggressive. It is already invasive. It already reaches into movement, speech, energy, family life, confidence, work, and the basic experience of being in a body. Given that, I have very little patience for the idea that I should feel virtuous for politely waiting around while safer, slower options fail to keep up.
The science is not fantasy anymore, either. CAR-T and related engineered-cell approaches are being studied beyond cancer, including autoimmune diseases, and early reports in autoimmune conditions have been encouraging enough to make the field feel genuinely alive. That does not make these therapies easy, safe, or inevitable. It means they are no longer just speculative science-fiction medicine. They are part of the conversation now.
If an intervention is harsh but rational, I want to hear about it. If it carries real risk but also real leverage, I want the chance to think seriously about it. I’m not looking for novelty. I’m looking for force.
There is a difference.
The Small Return of my Voice
And, yet the story refuses to remain purely bitter.
After failing the spasticity trial, I was able to restart clonazepam. That mattered more than I expected. My speech had been getting worse. My nystagmus had gotten rougher. The spasticity, as usual, had been dragging everything in the wrong direction. Once I restarted it, things improved.
Not perfectly. Not dramatically. Not in some ridiculous miracle narrative where everything broken comes back online at once. My voice is not fixed. My spasticity is not fixed. None of this has been solved. I am not writing this from the glowing mountaintop of symptom relief.
But, clonazepam helped. It helps. That is real.
My speech got clearer again. My eyes settled some. The internal static backed off enough that I could feel the difference. I heard more of myself in my own voice again, and that felt big. Not because I was suddenly restored, but because even partial relief can feel enormous when you have been losing ground for a while. There is a particular kind of gratitude that comes from getting back something modest but central.
Not a miracle. Not a cure. Just a little more access to yourself.
That is no small thing.
Asphalt and Blossoms
That was the tone of 2025 for me: whiplash followed by these strange little pockets of quiet.
I spent months training my body to qualify for studies. Standing. Walking the counters. Rowing. Sit-to-stands. Working around clonus. Working around fatigue. Trying to make myself legible to a protocol. At the same time, I was trying to hold together family life, figure out what work was even supposed to mean anymore, and accept that some days six minutes of standing and a decent shower count as actual accomplishments.
Somehow they do.
I’ve also had to admit that progress is rarely clean. Even the good things come mixed. A medication helps, but not enough. A study looks promising, but not for you. A screening day proves you can still do something hard, but it still doesn’t get you in. You leave a job that clearly needed leaving, and even that comes with grief, paperwork, and a weird hollow aftertaste.
I keep expecting life to sort itself into cleaner categories than it ever does.
It never does.
Clinical trials aren’t personal. I know that. They are scaffolding for knowledge. They are attempts to produce something sturdier than anecdote. I want that. I benefit from that. I’m not angry at science. If anything, I want better and faster science as badly as anyone.
But, when you are the one being measured, the process does not feel abstract. The line between exclusion criterion and rejection gets emotionally blurry even when you know no one is rejecting you as a person.
The body is still the body. The day is still the day. You are still the one in the chair.
Anger That Pays Rent
I don’t want resentment to become my personality. That seems like a miserable hobby.
Still, anger has its uses. It can sharpen attention. It can keep you moving. It can get you up to stand for five minutes when five minutes sounds pathetic and pointless. It can get you to walk the kitchen again. It can make you take the medication that helps, drink the water, slow your breathing before you stand, and keep yourself ready for the next opening even after the last one slammed shut in your face.
That’s the version of anger I’m trying to keep.
Underneath it there is gratitude too, though not the fake kind. Not the polished motivational kind where every setback reveals itself as a hidden blessing. Some things are just disappointing. Some things are just bullshit. I don’t need to turn every closed door into a sacred lesson to prove I’ve matured.
But, I am grateful that clonazepam gave some ground back without pretending to give all of it back. I’m grateful my voice feels more like mine again, even if only partly. I’m grateful I can still train, still adapt, still notice improvement at all.
I’m grateful, too, that the standard of care does seem to be moving. Not fast enough for my taste, obviously. My taste would be “yesterday, please.” But, faster than before.
And, that matters.
Faster Than Before
I’ve said versions of this before and I still believe it: the future of medicine is going to get better quickly.
AI-assisted science is not magic, and it will be oversold in all the usual stupid ways. There will be hype decks and miracle language and people pretending that biology has become a solved puzzle because a model produced a nice-looking output. I don’t buy that. Bodies are not slide decks. Diseases are not branding exercises.
Still, I don’t think the acceleration is fake. AI systems are already being used across drug discovery and biomedical research, from identifying targets to designing molecules to helping interpret complex biological data. The broader field is clearly moving toward faster, more computationally assisted research.
That doesn’t mean the next breakthrough will arrive neatly, or fairly, or in time for any particular person who needs it. That is the brutal part. Progress can be real and still too slow. Hope can be rational and still hard to live on.
But, I think the tools are getting sharper. I think discovery is getting faster. I think diseases like MS will eventually be understood more dynamically and treated more precisely than they are now. I don’t know whether BTK inhibitors will be central to that, or whether EBV-targeted work, engineered cell therapies, remyelination efforts, or something else entirely. Probably it will be some layered combination.
Whatever the answer is, I think we are moving toward it.
Still Walking Toward the Next Thing
So, for now, I’m trying to be angry without becoming only angry. I’m trying to be grateful without becoming soft around the edges. I’m trying to live inside the actual day instead of the cleaner version I wish had arrived already.
Some days that means standing a few minutes and calling it enough. Some days it means admitting that a pill helped and that this alone deserves gratitude. Some days it means being annoyed that a machine may have screened me out of a study. Some days it means imagining a much better standard of care a few years from now and deciding that, for the moment, my job is simply to stay ready.
Ready does not mean optimistic all the time. It does not mean calm. It does not mean gracious. Some days ready means pissed off, sore, tired, and moving anyway.
I’m still angry about those trial exits. I probably will be for a while.
But, I’m also still here. Still training. Still adjusting. Still paying attention. Still waiting, not passively, but in motion.
Tomorrow I’ll stand again.
Still moving
I want the next thing
Worth the try
This song contains a good amount of profanity, so if that bothers you or there are kids around, skip for now
