The Exoskeleton

Getting an exoskeleton changes the physical fact of movement. It doesn't change what it means to have needed one. On the gap between what technology promises and what it delivers.

The first time I walked with it, I cried. Not from joy, exactly. From something more complicated than joy — something I didn't have a word for yet, which is strange for someone who makes his living in language.

The exoskeleton is a piece of technology. Sensors, motors, a frame that reads the intention of movement and assists the execution of it. For someone with exercise intolerance, with dysautonomia that makes sustained physical effort a trigger rather than a benefit, this is not a small thing. This is the difference between moving through a room and not moving through a room. Between a walk outside and the controlled experiment of standing at a window.

I had waited a long time for something like this to exist. I had thought, in the way you think things before you actually encounter them, that having it would feel like being fixed.

It doesn't feel like being fixed.

Here is what the exoskeleton does: it removes one constraint. A significant one, the one that is most visible to other people, the one that medical and assistive technology rightly identifies as a meaningful barrier. It means I can move in ways I couldn't move before. It means the body can participate in things that were previously unavailable to it.

Here is what it doesn't do: it doesn't touch the years. The seven years horizontal. The years of being told the barrier was psychological, was willpower, was something I was doing to myself. The years of having to prove, again and again, that the constraint was real before anyone would help me work with it. The exoskeleton arrived after all of that. It doesn't retroactively reach backward and remake those years into something else.

AND I am grateful. AND the grief is still there. Both of these are true at the same time. I find that most people want to pick one.

The technology question that gets asked about assistive devices — does it work, does it help, is it worth it — is actually three separate questions that get collapsed into one. Does it work in the physical, measurable sense? Yes. Does it help with the actual experience of living in a body that doesn't cooperate? Partially, in some domains. Is it worth it? Worth is the wrong word. Worth implies a transaction with a clean ledger.

What I notice when I use it: a specific self-consciousness that I didn't expect. Not shame — I'm past that, or mostly past it. Something more like the awareness of visibility. The exoskeleton is visible in a way that my internal experience of dysautonomia never is. For years, I was invisibly ill. People couldn't see what was wrong. That invisibility was a problem — no one believed me, no one accommodated me, no one understood why a person who looked fine was not fine. Now the frame is there, external and structural, and people can see it.

(I know how this sounds. I know that visibility is what I've been working toward — in the work I do around making the invisible visible. And still. The visibility of the technology and the visibility of the experience are not the same thing. The frame says "mobility impairment." My experience is not fully contained in that phrase.)

My daughter looked at it for a long time before she said anything. Then she said: "Does it hurt?" I told her it didn't. She said, "Good," and went back to what she was doing. I stayed where I was for a minute, thinking about how children often locate the actual question while adults are circling the polite one.

What I am learning — slowly, with more resistance than I'd like — is that technology doesn't fill the emotional space that loss created. It addresses the physical fact. The physical fact matters enormously. AND the emotional space remains, and it requires different tools, different language, a different kind of attention.

The exoskeleton changes what is possible. It does not change what was impossible for a long time. Both of those things are part of my history. I don't need the technology to make the history disappear. I need it to give me more capacity to make something useful from it.

That, at least, it does.

Originally published on Substack. Republished here as part of the written tradition behind [The Honest Room](/workshops) and the methodology of [Testimony-Based Presence](/methodology).

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