I recently celebrated my 34th birthday; however, the milestone I was gracefully acknowledging was a decade of living with multiple sclerosis.

I say gracefully because when I opted out of disease-modifying treatment three years into my diagnosis, everyone was certain MS would take me out completely. Copaxone stopped working one year into treatment, and we immediately started me on Ocrevus, a tier-three therapy. The rigorous process of seeking insurance approval—which never came because of ‘treatment tiers’—and trying to get a $65,000 grant from the Ocrevus folks themselves was stressful enough. I didn’t even make it to my second infusion because I opted out after the first one. High-tier disease-modifying drugs carry severe risks, including rare but serious brain infections like PML, and many treatments have a shelf-life before you are forced to switch due to the way they impact your body. Ultimately, I didn’t know what either path could turn into, but I was more willing to gamble on what was intended to be my journey rather than an erratic attempt to suppress it out of fear of the unknown. Life would have been just as ambiguous on a DMT and I would be immunocompromised as well. The last time I visited my neurologist, he said I was “proof that MS is not a crippler of the young.” Hearing that brought a deep sense of relief that the decision I made for myself was the right one.

I’ve been managing well without traditional Western medicine; at this time, my only treatment is medical marijuana. I get my brain and spine scanned regularly to keep track of the progression of the disease, but it’s been dormant for a few years now. Since no symptoms have lasted more than 24-48 hours (the metric for considering a relapse), my doctor has not pushed for me to restart treatment.

For the last few years, I have dedicated myself not just to understanding how I got MS, but also to mapping a blueprint that connects the human mind to the hardware it operates. While learning to survive in this ambiguous space of being an MS patient, I had to modify my lifestyle and adapt in many areas. As someone with a degree in environmental science and policy, my education focused on studying complex systems and creating homeostasis in our macro-environment. With this new scope, my perspective was forced inward. I realized I needed to apply those exact same ecological principles to my own micro-environment.

The executive plan: use it or lose it. Through my pet-sitting business, thousands of hours of walking had become a moving meditation; gardening turned into an exercise in patience and resilience; art became a mode of communication and a cathartic release of the stress that was allegedly destroying my life.

The original goal to “learn new things in order to create new neural pathways” quickly evolved from basic brain games into a deep, universe-guided dive into physics and ecology. It led me to map the mechanics of an induction coil onto how anxiety overloads our nervous systems to fuel autoimmune deficiencies. Guided by thinkers like Garrett Hardin and Aldo Leopold, I’ve stopped viewing my body through artificial constructs and started treating it as an organic ecosystem.

When I think about achieving this homeostasis, I always think of Remi Boncoeur’s sarcastic quoting of Harry Truman in Kerouac’s On the Road: “Lowering the cost of living.” For Remi, it was a way of adapting his own conditions to match the reality he was in. I understood then that we must reduce those costs ourselves. I’m not talking about theft of groceries and other local goods; I mean refusing to be told what things mean, and choosing to define those meanings for ourselves as we redefine what holds value. I want to help bridge the gap between the cost of living as a financial deficit and the very real price our minds and bodies are paying to stay alive in this fast-paced world. I want to help the brain understand concepts so deeply that the immediate association creates the unintended double meaning that makes the matrix seem intentional.

The collages I put together here are meant to speak for themselves. They are designed to make you think, to force your mind into the same rapid associations that unlocked this framework for me. To be completely honest, I don’t fully know how to weigh all these different pieces. Somewhere along the way, the science, the movement, the animals, and the learning converged into something that feels like a miracle. I am not claiming a cure, and it is incredibly hard to explain—but I am living proof of a masterful, unexpected adaptation to survival.

As for future chapters, I’m still writing them. In the meantime, enjoy the little pieces I am putting together in this chapter while I learn how to be a person.

– le chat

 

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Disclaimer: This is my personal journey and framework for living with MS, not formal medical advice. Always consult with your healthcare team before making changes to your treatment plan.