Sometimes the clearest way to explain something is to write it for one specific person. These are those letters. More or less.
Dear Coworkers & Casual Acquaintances: On Why I Was Always Gone After Six Months
If you knew me before 2022, you knew a different version of me. Bubbly, quick with a comeback, the person who remembered your favorite food and what you said three conversations ago.
What people who knew me from work, or nightlife, or cultural spaces, or wherever our lives crossed in brief probably couldn't explain was the pattern.
Six months-ish. That was usually my limit in any structured commitment before something gave out.
I'd be excellent and then I'd be gone.
For work stuff: It turned into only being able to WFH under very specific Goldilocks stress conditions, and/or freelance stretches, the contract work, so this tendency to fade out and then start a new project wasn't flakiness, but it also wasn't truly the scatterbrained ambition story I sometimes handed people as a partial explanation.
It was a body running out of capacity on a schedule I didn't have a name for yet.
What I know now is that I've had MS for a while now. The lesions in my brain, specifically in the periventricular white matter that coordinates cognitive sequencing and processing speed, were already doing their work decades before anyone looked at my brain and named it. Sustained load under stress doesn't just tire me out. It physically interrupts the wiring. The person you knew was real, and she was also running on a system with a hard ceiling I kept hitting without being able to explain why.
The six-month wall wasn't about commitment. I love intense projects and team goals. It was neurological load-bearing capacity, and I was already past what mine could hold before I understood there was a limit at all.
I'm telling you this not because I owe anyone an explanation, but because if you've wondered why I went quiet, why I stepped back from spaces I clearly loved, why I could be so present and then so completely gone: that's why. It was never about the people or the work. The system ran out of room. It needed to stop before it could start again. It just took until 2025 to find out that was the technical term for what had been happening all along.
On How MS Looks Different For Different People
Most people picture MS as a mobility disease. Wheelchairs, walking aids, visible physical decline. That's real, and it's what your family's experience with it primarily sounds like from what you've shared with me. But where the lesions land determines what the disease actually does to you, and mine didn't land there.
My MRIs show multiple white matter lesions in keeping with MS, concentrated in the periventricular white matter, the tissue that coordinates communication between brain regions that need to work in sequence to do anything. Talk, move, complete a thought. All of it depends on that wiring staying intact.
Mine isn't. Like, there have been black holes burned into my brain, in some parts.
What that means day to day is less visible than a mobility symptom and harder to explain. Processing speed slows. Sequencing gets patchy. I know what I want to say or do, and the pathway to actually executing it is unreliable in a way that has nothing to do with muscle or mobility. Until the stress of cognitive actions cascade into my CNS shorting out, and then walking gets more wobbly and I drop more things.
It's not a perfect comparison, but it's the closest reference point I have to something you'd recognize: it's closer to what I watched happen with that Huntington's patient you worked with than to the MS you know from your family. Not the same disease, not the same mechanism, but a similar functional picture on the outside. Intact intelligence, unreliable execution. If that makes sense?
The meaningful difference is that mine can stabilize between flares rather than progressing relentlessly. But on a heavily affected day, the functional presentation is closer to what you saw in that patient than to what most people picture when they hear MS. Which is useful context for why some days I'm fine and some days I'm not, and why "just a bad mental health day" doesn't really cover it.
Nostalgia: Temporal Issues
You know what it is to carry decades in your body.
So I don't have to explain why a smell, a quality of light, a particular silence can pull you out of the room you're sitting in and drop you somewhere else entirely, somewhere that feels more real than here.
My brain has black holes in it. Not a metaphor. That's just what some of my MS lesions look like on an MRI, dark spots where the white matter used to be, where the wiring got cut.
The cut doesn't stay where it's supposed to. It reaches into time. Past stops filing itself as past. Present stops holding still. Memories come back with their emotions still attached, at full volume, like no time passed at all.
I remember a meal, the three of us, with my ex-husband. I was explaining how when I startle, my heart keeps racing long after whatever startled me is gone. My body tenses up and does not unwind.
You said "like a rabbit" so softly that it landed somewhere I didn't know was still open.
"Exactly," I said. It fit so precisely it stuck, and it has stayed stuck through every year since.
So when the guilt of being disabled hits, the particular kind that comes from watching people I love go sad and helpless over what my body does and doesn't do anymore, I hear your voice say it again. I feel the warmth of that table. Not a memory I'm retrieving. Somewhere I'm briefly inside again, same texture, same temperature as the first time.
That's the nostalgia. That's why it can look strange from the outside, the sudden distance in my eyes, the way I go somewhere else mid-sentence.
It feels like I'm being pulled into a vivid memory. Into an echo.
Sometimes the echo is warm, something I can borrow against a hard present. Sometimes it drags me back into something harder to sit inside.
I can usually regulate it. Less easily now, when my resources aren't what they were and my nervous system is already spending everything it has just to get through a Tuesday. Under enough pressure I wilt. After a certain point I just cannot withstand more input.
You know what it is to be haunted by your own history. I'm telling you this so that when it happens in front of you, you know what you're looking at. Not crisis. Not regression. Just a rabbit heart, remembering.
