What Building Looks Like From Here

I was talking to a friend the other day about how so many people have asked me some version of: “You build so many things already, why can’t you just get a job and get paid?”

And I was telling him how frustrating it is that people can see what I produce, but not what it takes to produce it. They see the things I build, but not the physical state I am usually in while building them. They see the coherence, the systems, the offerings, the writing, the organizing — but not the conditions under which any of it becomes possible.

He said something that stayed with me.

“You know, what you build is so incredibly intentional and from my perspective might take someone months with a team. You build these things and if I didn’t know you and what it costs for you, I wouldn’t have ever thought the things were made by someone in your situation.”

And that helped me understand something more clearly.

When an individual is cognitively “gifted” — I hate that word, by the way — and is able to build coherent systems, and you do not actually see what their physical state is, it becomes easy to imagine a life of ease that the work comes out of.

It becomes easy to assume capacity where there is actually careful design.

It becomes easy to assume productivity where there is actually survival, regulation, recovery, and constant negotiation with the body.

Interestingly, I had installed a camera in my room a few days ago after going unconscious multiple times and not knowing how long I had been like that. The camera was originally a way of tracking loss of consciousness. It was not installed to document my work or make a point.

But it revealed something I wanted to share here.

It showed what my physical state usually is when I am building.

Not to say, “I keep building and ignore my body.”

It is actually the opposite.

I build as I care for my body.

Some days start with the ability to sit upright. Some days, the only way I can live is by lying flat.

I listen to my body and adjust positions every few minutes.

My body cannot regulate temperature well, so I have a bed cooling system, portable AC, bedside fan, and central AC going at all times. I can go unconscious and unresponsive without active systems trying to keep me cool but not freezing.

My body struggles to keep me upright for more than a few minutes at a time. So I have an adjustable bed with a ton of pillows that helps me be in sitting positions. But even then, being upright for too long is really difficult and can send me crashing if I do not adjust as needed.

I also live with fluctuating limited physical and cognitive capacity, and I protect it with everything I have.

I do not text often. I ask people to call instead.

I try to limit my attention to things that genuinely matter and that I actually have capacity to do.

And because my cognition works differently, I can sometimes have the capacity to build something, but not the capacity to fill something out. I can have the capacity to understand a system, but not the capacity to complete a form. I can have the capacity to lead, but not the capacity to do conventional productivity on demand.

People often think cognition works the same way for everyone.

It does not.

Just because something is easy or less taxing for you does not mean it will be the same for me.

And one of the worst parts of living with severe chronic illness and disability while also carrying the ability to build and lead is that you spend so much time trying to explain why you can do one thing and not another.

Why it is not laziness.

Why it is not fantasy.

Why it is not inconsistency.

Why capacity is not a straight line.

I have been asked so many times:

Why can’t you just freelance?

If you can’t work for somebody, how can you offer these services on Sahana?

How can you lead?

And the answer is that every single thing I build, I build based on my capacity and my well-being.

I can offer services on Sahana because I design them in ways that work with my body. I create structures that can hold the services in alignment with my needs while still meeting others’ needs.

I can lead because leading, to me, is not micromanagement. My cognition is comfortable in relational things, including leading. And I am leading from my lived experience, which inherently honors every being’s well-being, including mine.

I cannot just “work” or “get a job” to get money because most organizations need reliable productivity on demand.

And I am not reliably productive on demand.

Trying to force that kind of productivity can be life-threatening to me.

I have also been in extreme pain recently from trying to work with a laptop in bed. I realized I actually need a bed-based work setup. But unfortunately, I cannot afford to feed myself, let alone set up something that helps me be more at ease while I build.

And still, I build.

Not because I am ignoring my body.

Not because I am trying to prove my worth.

Not because I believe work matters more than well-being.

I build things because I live in a world that needs them.

I build because I have lived what happens when well-being is treated as a luxury.

I build because what I build means something more than its monetary value.

I build because what I build deserves to be in the world for people who deserve to live with well-being at the core of their lives.

And I cannot do that while abandoning my own.

So I keep building from here, in the ways my body can survive.