• 01 Jul, 2024
• Jessica Mendes

A Visitation of Conscience

Something inside me kindled. I thought about the weight I’d been carrying for some time; the weight of transgressions I could not forgive myself for yet could not name in any satisfying way. I thought about the elusive sense of darkness that followed me all my life for no apparent reason. I don’t believe in a God who rewards and punishes. So why the resonance? Am I carrying some sort of karmic debt I am not aware of?

The truth is, this question has disturbed me for quite some time, floating around the back of my consciousness like a tortured insect. My suffering was at its worst in 2015, when I began to wonder if the surreal pain, I was experiencing represented “visitations” from above. A string of black nights, my heart pounding wildly against its cage, brought with it a sense of turbulence, angst, and chaos nothing short of profound. Breathing was difficult for a very long time, and I had muscle tremors. My head was an inferno. Emotional anarchy seized my body. It was not the prospect of death that frightened me but the raw vulnerability my illnesses brought. I have Lyme Disease. And CRPS. And Autonomic Neuropathy.

Every person experiences CRPS differently, but for me, my biggest problem has been overstimulation. Imagine a car’s engine in high gear when you first power it on in the dead of winter. Before you drive off you pump the gas to power it down. But my “motor” was stuck in that high gear. It is better now, but for a long time any movement – be it physical activity, thinking, or the stirring of emotion of physiological processes – stimulated my system beyond what most people can imagine. I am constantly dealing with overwhelm, and on a bad day, an internal sense of pandemonium. Add to that a sleep disorder and balance issues. I flounder. The dysfunction in my sensory neurons that process temperature, pressure, and vibration means my senses can get confused; I still get sensations like the sting of a bee. The tension goes mad in my body. I have come to wonder if my personal calling is buried in that torment.

Complex Regional Pain Syndrome (CRPS) – otherwise known as Reflex Sympathetic Dystrophy (RSD) – is a disorder of the nervous system characterized by severe, unrelenting nerve pain, and its origins are in the brain’s maps or pain maps. (According to the McGill Pain Index, it is considered worse than amputation or childbirth.) In essence, CRPS causes a distortion or enlargement of these maps. Brain maps are responsible for pain multitasking, and regulating functions such as temperature, pressure, vibration, sensation of movement, and sympathetic control. Given that the nature of plasticity is competitive, if a map is taken over or “pirated” by pain, its other duties suffer. This is a simplified interpretation of what I have learned.

Because of this, there is no exact science on how this manifests, so this is where individual symptomatology comes in. The way I see it, “hard neuroscience” defines a set group of symptoms and assigns them to a box called CRPS, but this disorder falls within the realm of soft neuroscience. It’s not western-medicine friendly. Self-education, and a multipronged approach, are central to healing. And that means understanding how your nervous system has gone off the rails because it’s not going to be the same for everyone.

In my case, I was a long-time adrenaline junkie. As if that wasn’t enough, I took a lot of acid and stimulants when I was young, which was really stupid given how sensitive my system is – but you can be stupid when you are young. As a result, CRPS started forming almost ten years ago. Today at 60 I stand on the other side of it, but it is a long road of recovery ahead. I plan to improve my walking so I can be more self-sufficient. I have made some headway in reducing stress, as I have calmed and balanced my nervous system. The trick is to gradually “desensitize” and work your way back to tolerating what is normally healthy, like movement and exercise.

Many of the sites, articles, or advocacy groups I have come across on CRPS parade images of fire or brain circuitry peppered with ominous red blotches. I get it. I have days when my foot feels ablaze or has sensations of cutting or walking on glass when nothing is there. These sensations are real and part of the pathology for all who suffer from CRPS. The problem is that thinking about, focusing on, or agonizing over these sensations strengthens the connections in the brain that are feeding them, further enlarging the pain maps. And these images don’t help.

Treatment options are abysmal in Canada because very few practitioners are researching it or even know about it – I learned most of what I know from American sources.  But it’s also because if you spend any amount of time researching how CRPS develops, you realize how utterly impossible it is to find a one-size-fits-all solution. The approach many doctors take – prescribing pills – is ineffective and doesn’t really demand much from the patient. Not only does that framework lock us in as victims, but it is also pernicious for CRPS.

Much of what CRPS challenges us to do cannot be addressed above water. It cannot be addressed within the realms of normality. You have to submerge; ask yourself questions you’ve never asked yourself before and be willing to consider things wildly outside of your frame of reference. You have to forge a path forward that is unique to you, all while feeling like you are fumbling around in the dark. You have to train your brain to calm down and sort out what you are being called to do. In this sense, while CRPS is known as the “suicide disease”, I believe it is also a spiritual calling, in the sense that it calls on you to calibrate and consider your life in a completely different way. To understand that you may be mistaken in what you thought your life was about. As the famed author Thomas Moore once said, “We may discover that we are most ourselves when we are furthest from the self, we think we ought to be.”

I have several identities, and one of them is a cult survivor. I have always felt there is so much we can learn from cult survivors. In most cults, your brain gradually shuts down to its most basic functions as little is required from you other than to follow orders from your dear leader. All the road signs that might warn you or give you a heads-up are ones you don’t recognize anymore because you can no longer think critically, or for yourself. You think other people’s thoughts are your own. Your brain has changed to adapt.

To address CRPS effectively, you need to understand that your brain will also adapt to change in beneficial ways when you adopt a growth mindset in whatever activity or endeavor you are pursuing. Or at least that’s what the prevailing view seems to be these days when for a long time it was different. Doctors and scientists considered the brain to be more like a machine and gave up on stroke patients (as an example) who did not show outward signs of being able to communicate. But CRPS demands a radically different way of thinking. You have to believe your brain can change and heal. And you have to be familiar with a concept called neuroplasticity.

Neuroplasticity, defined by Norman Doidge as the property of the brain that allows it to change its structure and function, contradicts long-held theories in science that claim the brain is hardwired or fixed. “It is more like a plant than a machine,” he has said, meaning it is both adaptable and malleable. And since the origin of pain can be found in the brain’s pain maps, those who suffer from it can find great hope, inspiration, and healing through neuroplastic approaches.

Norman Doidge points out that “one of the core laws of neuroplasticity is that neurons that fire together wire together, meaning that repeated mental experience leads to structural changes in the brain neurons that process that experience.” And so, he explains how the competitive nature of neuroplasticity allows us to weaken chronic pain circuits by reclaiming maps “taken over” by pain processing, using touch, sound, vibration, and visualization. There are numerous tools around to accomplish this, including meditation and visualization, but attitude is key.

With my condition, I have found that finesse is required. I have had to relearn how to breathe properly, as my breathing apparatus was all messed up. As many disciplines link the breath to spirit, I have found myself called to breath work. I am not a religious person, but I have long been drawn to Celtic spirituality, and I have Indigenous roots. With what I know I am still discerning which of my stories are important right now, as well as what my body feels like when I am in it.

The stories that make up my life – random, uncommon, and sporadic – have been one step removed; a looking glass into a ghostlike experience, fueled by a wired nervous system, electric and deeply sensitive. Perhaps this is in part due to the difficulty I have always had owning my life and everything in it.

“How easy it is for life to go one way instead of another,” a character in a novel I am reading says, and I think about how much of my existence has been, in some way or another, about trying to tip the scale. I’ve always been unsettled and obsessed; straining to connect to a world that felt alien. And now that foreign body has come home, calling on me to take heed.