I built Selfscape to get my life back.

During the pandemic, I decided – for the first time in my life – to take a prescription sleeping medication. Like so many, I was stuck in my home alone for weeks on end, which happened to be 2 hours away from civilization. I was having trouble with the lockdown routine.

I thought it would be a few weeks. I ended up stuck on the med for over a year because coming off was hard.

Feeling progressively foggier and neurologically compromised, I decided I would come off of it come hell or high water. My doctor told me I could do so without tapering. What I lived through in the months and years afterward is nearly too hellish to describe.

Until that point, I'd lived an active, healthy life with no chronic issues. My new problem, "protracted withdrawal syndrome," as it's now sometimes called, exists as a buried footnote in the literature even as the people experiencing it live an unending nightmare. One evening, my nervous system recalibrated without warning, and the symptoms it produced were a kind of neurological hellfire.

My vision, hearing, breathing, and autonomic system were severely compromised. But I kept going to work. I told myself it would pass. It did not.

Then, in my compromised state, I got COVID.

If you have lived through anything like this, you already know what comes next. There was a constant ringing in my ears that turned conversation and basic attention into labour. My heart and blood vessels lost their ability to calibrate. Patches of my body went numb and stayed that way. Reading, exertion, looking at screens or words — my livelihood — became something I could only do for short stretches before the room started to tilt.

For a while, I couldn't tell which symptoms belonged to which problem, and my practitioners were little help. Was the tinnitus the medication or the virus? Was the dysautonomia post-viral, or had the withdrawal pulled my autonomic system off its rails? Were the cognitive and vascular symptoms inflammatory or something else? I would have an answer one week and lose it the next, because the two processes weren’t obvious.

Most chronic illness isn't one thing. Yet the medical system is built for one thing at a time.

Indeed, most chronic illness behaves this way — it isn't one thing. Yet the medical system is built for one thing at a time, with “guidelines” that can sometimes compound the confusion by obscuring patterns across systems. Cross-referencing, on the other hand, provides insight.

This became the most important takeaway from this experience. The medical system does not have a label for complex multi-system shutdown. I even had my family doc say to me regarding dysautonomia — "is that even a thing? It sounds made up." Cue my astonishment. So I stood outside the system, in spite of countless visits and, eventually, tens of thousands of dollars spent on solutions. I had scans, panels, referrals, and second (mostly competing) opinions. The summary, repeated in slightly different language across more than a dozen offices, was one of the following: we're not sure; we don't see anything; there's nothing we can do. The worst was the silence, followed by a referral to someone else who would, in time, disappear or also tell me there was nothing they could do.

The decision

There comes a point when you have to decide what to do in the face of systemic failure at every turn. You can accept it, which means accepting the new bottom-rung floor of your life. So many people will have fallen through the cracks this way. Or you can refuse this compromised floor, which means becoming fully responsible for figuring out what's actually happening in your own body simply because no one else will.

Eventually, with encouragement, I refused to accept it and decided I would spend and design everything I could to find a way out of the maze.

I used my research skills. As an academic, I started reading medicine and conducting research the way I did for my PhD. Countless papers on PubMed in neurological, vascular, and mitochondrial medicine. Among the many dead ends were incremental paths forward. I became the kind of patient that doctors hate. I read the literature on withdrawal and acute viral insult that the prescribing guidelines don't reference.

As I tested and re-tested my hypotheses over the years, I then needed to build a place to hold all of the data and draw inferences. They were specific and sometimes unfashionable. Many of them demonstrated efficacy better than what I'd been told to expect.

Many of the treatments I'd been reading about didn't exist within driving distance of my home. So I bought a car that I could live out of and drove around North America to find the needed care. I went to Toronto for functional neurology. I went to Utah for brain imaging that wasn't available in Canada. I went to Vancouver for a neuroplasticity protocol and intensive hyperbaric sessions that the public system refused to fund. I went to Chicago for visual rehabilitation. And I spent time convalescing in Switzerland with dear friends who rescued me from the abyss I had fallen into and knew I needed a boost to get started.

I slept in that car for much of the travel. Since the treatments cost what they cost, I could choose to either pay for them or pay for hotels, but not both. So I paid for the treatments.

I tried targeted protocols for tissue repair and immune modulation. Brain stimulation at parameters I had to cross-reference in the published literature because no one was offering it. Compounds that would stop the inflammatory cascades and vascular issues. Each compound was tested and chosen only if (a) there was precedent, (b) it worked, and (c) I saw progress. Mechanisms were mapped to symptoms, and combinations would be continually revised depending on what my body actually did in response. [Before this mess, I was someone who avoided taking medications at virtually any cost. The irony!]

I effectively became an expert in my own biology.

Somewhere in there I started tracking everything, from the numbness to the particular quality of the tinnitus on a given morning, and what shifted when I added something or took it away. Each practitioner would only ever see their own slice of the puzzle, so nobody was holding the whole picture. The patterns I needed to understand were mostly in the gaps between those appointments. Eventually I began to build the software I needed — something that could pull all those details into one picture. In the end, I built the kind of system I needed, and the kind I wished my practitioners had had.

Where I am now

I'm 80-90% of where I want to be. I may never quite be finished, but this investigative process eventually became a lifeline when I saw the gains I needed. I tried doing nothing, too, but that was simply a dead end.

I have enough of my life back. I function well in the classroom. I can read for hours. I do not yet know where the ceiling is, and I am no longer afraid to find out.

Along the way, some of the clinicians I was seeing started asking how I was putting the picture together, and a few of them eventually invited me to run their more tangled cases through the same system. That’s when it stopped being something I’d built only for myself, and it’s why I went on to formalize training in Therapeutic Coaching and Functional Diagnostic Nutrition, mostly so I could speak the language of the people I was working with.

Why I built this system

There are more people falling through the cracks than anyone wants to admit.

In the years I spent doing this for myself, I met a lot of other people doing their own hard healing work, and they are, by a wide margin, the most knowledgeable folks I spoke to along the way. They also began their respective journeys when they had no choice.

Almost all of them had a cascading multi-system problem. Sometimes stress layered with a medication reaction, or a surgery that didn’t end the way it was supposed to. The clean stories aren’t the common ones, and the messy ones are often sent to several specialists whose interpretations compete.

Selfscape is the system I needed. It is not a clinic, and it isn’t a replacement for care. It’s a way of bringing together the symptoms, timelines and interventions that normally live in separate charts so that the patterns across them can be seen clearly by both the patient and the clinician working with them.

If you’re a clinician with a case that won’t resolve, or someone whose practitioners each hold a piece of the story, I’d be glad to show you how it works.

With care,
James

If any of this resonates, reach out.