I’m lying in bed in a beautiful little room of my own making in my parents house. Outside the world is grey and icy. A storm is coming and I can feel its approach in the darkest little corners beneath the folds of my skin; in the crooks of my bones. The house is mostly silent except for a few creaks and coughs, the low hum of artificial heating, and a particularly chatty crow somewhere nearby. My room is bathed in a surreal energy. One that I have become quite familiar with. I let it draw me inward as I explore another familiar feeling. Paralysis. Sure, I could probably move, but every pore pulses and screams, overwhelmed by the heaviness felt at the mere thought of moving. Will this keep getting worse? Will I eventually become cemented in my own body? Cemented in the vessel that tortures me with aches and pains everyday? I take a deep breath in and as I exhale I remind myself that I am in mourning. For myself. I must be gentle and honour what is being asked of me. To think about my death.
I let my mind swim to my favourite spot – what does it mean to experience your own death? A delicious paradox meant for feasting not finishing. A paradox I comfortably return to when simple truths no longer satisfy me.
green knit sweater
born of fast fabric and faster profits
graced with gentleness, safety, and love
by its wearer and her soft magic
what is hers will always be hers
but it is also now mine
a long tradition of women sharing cloth to keep each other warm
In October 2017 I was diagnosed with fibromyalgia. After only a few shorts months, I started the new year full of potent rebellious energy ready to launch a full scale attack against my newly diagnosed and worsening condition. The diagnosis, while difficult to embody, in many ways appeared as a shore to my drowning self. Yet, I didn’t know if I had the energy to make it. I had spent years losing myself in the darkness of a life debilitated by fatigue. Perhaps it was easier to just let the waves swallow me. Muffling my screams and turning them into beautiful gull songs and bubbling waters. Folding myself silently into the dark waters. But somewhere between the lived darkness and the dreamy gull songs, something happened. Not a major turning point or eureka moment but rather an almost undetectable evolution. Like a shiver that runs down your spine or hitting the refresh button on your browser. Then came many more. So small they barely made a sound. Slipping into my fingers, toes, hairs, melting into my skin like oil after a hot bath. It was beautiful but I barely understood them at all. The more they happened, the more I became aware of the strange dance that existed between these quietly refreshing ripples and the drowning feeling that hung around me like a humid day.
Another paradox? I wasn’t sure yet. But a small part of me knew that I was bound to it’s rhythm in some meaningful way that would only reveal itself if I dedicated myself to its intoxicating and uncomfortable wisdom.
It was also around this time that I had one of the worst pain episodes to date. I was in a feverish and near delusional state. Being on day 2 of an agonizing flare-up not bested by any of my usual (and not so usual) remedies. Filled with chemical medicine, plant-medicine, and the medicine most hard swallow – seeing your pain reflected through the eyes of your beloved and trying your best to reach them with overwhelming proclamations oscillating unpredictably from love to shame. Nothing freed me from its grasp. I moaned and cried for 3 full days. The middle day marked the first New Moon of 2018. I was haunted with delirious and desperate images of labouring, giving birth, and babies. When I wasn’t seeing these images, I was experiencing the labour in my body. A merciless ache in the middle of my back spreading down into my stomach, my ovaries, running down my thighs and then back up my spine to my crown. The pain a thick liquid expanding and retracting in and out of every corner of my body. In those moments I began to understand why doctors drilled into patients heads when they had migraines. I wished someone would drill a hole in my back and let the black liquid out.
Pain consumed me. My body wanted to purge something. An energy. A demon. I didn’t know. I was irrational. I knew this pain had the will to unhinge me and in those feverish moments, I was truly afraid that it would.
My partner at the time managed to help get me to my family doctor. I had already learned that I needed to be as cold as the four walls around me to get my doctor to hear me. There was no room for my cries here – help or otherwise. After a lengthy and clinical explanation of the intense pain I was experiencing he said something like this: “most people don’t know this but mild discomfort in your back combined with nausea is often a symptom of acid re-flux”. I asked if the fibromyalgia was amplifying the back pain and he dismissed the very idea. His brow creasing with irritation as I tried to draw a circle around his carefully drawn line. My body pulsed with shame and exhaustion.
His diagnosis was comforting in its simplicity and in my weakened state, I accepted his prescription for medical grade antacids and went on my way. Thanking him for his help. You see at this stage, despite my immediate family and partner’s recognition of my condition, I believed that my symptoms were either psychological manifestations and/or physical reflections of not having a healthy and productive lifestyle.
Needless to say, the antacids did nothing to stop the pain. It was merciless. The only thing that made me lucid from time to time was my anger. Anger at my doctor for calling this “mild discomfort” but also anger at myself. For allowing a man in a white coat to choose my words for me. So, I rebelled the best way I knew how. I reached out to an energy healer I had worked with from time to time – desperate for help. I told her what was happening and she wrote this back to me:
This is crazy! I had a dream this morning and I’m pretty sure it was a message for you… I was in a public washroom and there was a hole in the door. People were coming up to look into the doorway even though I was taking a pee. I looked down and my panties were full of stringy sticky blood. I was confused because right now I don’t have my period back and it looked like after birth or I don’t know. All this to say, I had to ask people to leave so that I could deal with the situation in private and clean up the mess.
The image struck me so deeply I began to cry. The healer coached me through the next couple of days as I energetically laboured. That episode was one of a number of visceral and profound messages I received around the purpose of my evolutions – but back then it was just a tight ball kept in motion by fear, curiosity, rebelliousness and doubt.
Unfortunately life moves to it’s own rhythm and despite a number of profound inner evolutions, in March 2019 I found myself back at my parents house grieving a marriage that after a number of difficult years – was now over. I had few prospects for ever truly becoming financially independent as I built my somewhat flimsy career thus far around helping small businesses, not for profits, and entrepreneurs trying to do good. As rewarding and meaningful as the work was, it stopped being financially viable as my capacity decreased and my ideas around the purpose of work and productivity became even more contentious and confusing. Because for me, no matter how much I saw truth about the world emerge from the way my condition was met, I still internalized everything as a personal failing. Evidence of a life wasting away.
Every moment I experienced inside and out passed through a lens of self-doubt and self-hate. Sometimes I would manage a win against the dominating belief system. But mostly not. I did not deserve to feel good because it was own fault for feeling so bad. Especially when I have the all this incredible privilege and love around me. So the blame went deep.
There was however a ray of light amidst all this. Just a couple of weeks before my marriage ended I had landed a job in the most serendipitous of ways. A dear friend of mine had befriended a woman who who was trying to save a local arts cafe. She was looking for a someone to help her but was having trouble finding or even believing that what she really wanted in a new employee actually existed. It was kind of a strange list, mind you. But after listening quietly to all she has to say, he said, “I know that person”. Within 24hrs I had a new job.
With my marriage devastating my insides and my condition ravaging my outside, I threw myself into my new job. The job turned out to be the beginning of something so much bigger than I ever imagined and despite what I’m about to share, it helped me find myself again. But not before it led me down a road of repeating the pattern of pushing myself to my limits to prove my own value. There was one big difference this time though. While I did feel like I was participating in this repeat, I also felt like I was witnessing it. Like all my loss and grief over the past few years afforded me a clarity that wasn’t there before. I was still very sick and worse than that – I was making myself sicker. Even though I was exercising my value beyond its capacities, I was still drowning. Hating myself wasn’t doing anything but adding weight to my sinking body.
I witnessed this all until finally my body collapsed. A liquid paralysis trapping me in the folds of my own bed. My capacity diminished and slowly I became unable to show up in the life I once knew. Most of days were spent in bed on my laptop somewhere between work and streaming hours of television. Despite passionately coordinating and creating events with artists and musicians, I almost never attended and when I did there would be painful consequences. So I listened. I paused. I slowly brought my life down to a low simmer and turned off anything that I felt was non-essential. Including many relationships that were not a part of my immediate day to day – and even some that were.
The late summer of 2019 I was bathed in the immense healing power of quiet. I spent hours outside just sitting and listening. To the birds, to my body, to my heart, and to my frequencies. Inbound and outbound. It was here that the hurt of the breakup finally had enough space to scream all its grief and ugliness. Until finally it reached a breaking point and I pushed myself through and onto the other side of it. I was finally somewhat financially stable – even if on a very small income and because contributing to my parents utilities and grocery bill came at the fraction of the cost of being out on my own. But it felt good. I still felt like maybe I was wasting away but the gratitude I was cultivating around what was available to me in the moment started to grow.
I also unfortunately continued to get a lot sicker. Now along with my debilitating fatigue and pain, I noticed a decline in my short term memory, tremors started in my hands and legs, and my sensitivity to sound and artificial light grew almost unbearable at times. Everything in my environment had the potential to hurt me including the sound of my loved ones voices and movements. A door closing in another part of the house could reverberate through my body as if someone struck a match against my bones and lit my nerves on fire.
So more and more I turned to nature and outdoors to cool my hyper-reactive system. The hours I spent in non-verbal bliss had profound effects on my ability to negotiate with my internal environment as I tried to find safety in the external ones. I took my cues from nature and began the slow process of living a life more grounded in the natural world and the innate spirituality that exists within it.
I became so convinced that the only path forward lay in that direction that in September I decided to take a formal training course in energy healing (an adapted method inspired by principles of Reiki). It was here that the most incredible things happened. Most of which I will get into at another time. But most profoundly, I saw that the painful noise I thought I lived in was rather a collection of unsynchronized voices. Some of which I was beginning to hear. One of these voices told me very clearly that my diagnosis was not complete. It also told me that my family doctor would not be the one to help me. Our glorious Canadian healthcare system had failed me. I can be grateful out the ass for what it represents and provides countless others, but my truth was that at times this system had let me down. In fact, I found that 90% of my experiences with it were riddled with dangerous compromises, negligible behaviours, bias, sexism, and apathy (likely a result of a system that favours bureaucrats with medical degrees over healers). It made me sick to my stomach to imagine what it must be like for people who have been abandoned and abused by these systems for far longer and in far more systemic ways. I desperately wanted to crawl deeper into my hole of being undeserving but I was angry enough not to.
Then another dear friend sent me the video of a doctor in California who was practising functional medicine but in a profoundly connected and forward-thinking way. He was looking at the synchronicities and symmetries (or lack thereof) within the body and how they can manifest as a series of seemingly unrelated symptoms.
I started watching the video and within 5 minutes of an hour long video I knew with my full being that this man would become an essential part of my story. I messaged him on FB before I even finished the video and within 15min got a response. I spoke with him and decided to take an enormous leap (met with a lot of resistance even within my support system) and paid a good chunk of change (in USD of course eyeroll) to have him do a case review of my medical history. Not after I used his 15min free consultation to, as I put it to him, “look him in the eye” and make sure he wasn’t lying when he said he wanted to help me.
I spent the next month collecting all of my medical records, filling in form after form asking me bizarre and highly specific medical questions and testing my cognitive abilities. I was also asked to do a number of blood tests and other minor things to help paint a picture of my what my body was doing. Then, last but not least, I wrote out my whole medical story. I began my story with what I believed to be an insignificant concussion that happened more than 10 years ago but really only got into the meat of my ups and downs from 2013 onwards. This was challenging because of how compromised my memory is. A combination of my condition, PTSD, and a desire to detach from the unbearable process of coming to terms with why you lost your marriage in the fire. So I took my 287 page medical records from my family doctor (which starts in 2013) and I slowly used that as a rough map to sketch out a timeline of my health. Without meaning to, it became a much bigger story. I included major moments in my marriage, my career, my personal journey, and of course all of my significant interactions with the medical system. When I finished the document I saw a very clear picture. I saw that my intuition had almost always been right and when I chose to listen to it – the needle in my life moved. I also saw the little notes my family doctor wrote that clearly showed his bias; I would need to be more cautious about my relationship with him. This was a harrowing but incredibly healing process. After crying in my mothers arms for almost a week straight, trying to summon the strength to see it through, I sent it all off and waited.
A day before my phone call with the doctor in California where he would share his case review findings with me, I sat with my now dear friend, whom up until now you’ve only known as my employer at the local arts cafe, smoking a joint in her eclectic little apartment. “My life is going to change tomorrow. It’s a profoundly unique experience to know that I will not be the same person tomorrow that I am today because of this one phone call.” She not only held space for me – she took my hand and waded into the dark waters. Protected by the wisdom and belief she had earned through her own health trials – slaying beasts you can’t imagine. It was a comfortable and even exciting space for her to sit with me here and seeing that made me get a little excited too.
The next day I got off the phone with the doctor in California with an updated diagnosis. I’ll bullet point what he said below. While he did record the whole session for me to watch, I never have. I was in such a state of shock and had little reaction to anything he was telling me. Shock at how right I was. Shock that even still, I found myself pushing it down and saying, “you’re making a big deal out of nothing Toni. This is all in your head and this doctor will find out that you’re a fraud sooner or later”. In that moment I was both a child and a her grandmother.
The following is what he said to me (not verbatim mind you, but close enough):
- First and foremost Toni I want you to know that I believe everything shared with me. If you want to continue working with me, our relationship is likely to be lifelong and the most important thing is that we trust each other. You know your body best and if ever your intuition tells you something is off – tell me. If I can’t help you anymore – I will tell you.
- I believe your diagnosis of Fibromyalgia was not wrong but limiting because of the history of the condition. (I will get into this in the future I promise).
- In my field we are calling what you have – Myalgic Encephalomyelitis or a much less loved term – Chronic Fatigue Syndrome.
- Every patient is different although there are certain consistencies. In some patients it is autoimmune – in others it can even be cured or go into lifelong remission.
- I believe that you have the autoimmune kind – and I believe that it’s in your brain. It will be lifelong.
- Everything you described from your difficulties in your relationship, to your emotional swings, the fatigue, pain, tremors etc – all deeply informed by your condition. It’s not your your fault or make-believe. The parts of your brain affected will likely give you clarity around why things happened the way they did.
- We will be able to help you manage this. You will have me as long as I live, in your corner, doing the research, sharing it with you.
I wish I could sit with each of my friends and share this story with them personally and maybe over time I will, but my energy is limited these days and I am honouring that despite the discomfort in sharing my story in this way. I’d also like to give you, dear reader, fair warning that hitting up Google for some clarity around what exactly ME is, has downsides. For one – the information and statistics are very bleak. As an example, it is frequently compared to late stage HIV but with worse prospects for treatment. The unfortunate reality is that while close to 30million people suffer from ME worldwide – it is still systemically and intentionally dismissed. Why? Well here are a few hints:
- until roughly the 1950s it (along with many other conditions) was diagnosed as hysteria appearing predominantly in women (as defined by the medical system).
- in 1970s/80s they changed the term to conversion disorder but essentially it was the same thing – just cleaned up and put in the hands of modern psychiatry, psychology, and psychiatric institutions to research and develop cures.
- to this day, people are still institutionalized against their will because of extremely unethical studies lead by scientists and doctors who are ignoring the ever growing research supporting this as more than just a psychiatric condition. This is very real. Check out #MillionsMissing.
- only a shockingly small percentage of medical schools in the US even acknowledge the existence of ME/CFS.
- unlike its cousins, HIV, MS, and other auto-immune conditions – there are no specialists who work with ME except for the amazing few who are using more holistic medical and alternative healing practices to provide relief to patients. But even they will tell you every patient is different.
- Autoimmunity that affects the brain is scary AF. As is ME. The stories are infuriating, isolating, tragic, and hard to hold.
Despite how heavy my heart has been, not only for myself but for my family who is witnessing and processing this, I am happy. I have experienced a type of death. One that has freed me. Truly. These last few years have finally culminated in what I call my big permission slip from the universe to begin the process of becoming exactly who the fuck I want to be. To show up with all of who I am. All of my truth – uncomfortable or not.
I look at old photos of women “in hysteria” and I see a great power. In those distorted faces, frozen in an intense paradox of simultaneous life and death, I am reminded of my own wildness. The transcendent and frightening power of pain and the magic I found in quietness between its breaths.
My new world is wild, untamed, angry, rebellious, intuitive, and powerful. A circle in a world drawn in lines.
Jan 20th I will be leaving to California to visit this doctor and do an intensive week of “Body & Brain” healing where I will learn more about how a brain with autoimmunity works. After that week my dad, who serendipitously retired early, and I are taking a road trip down the pacific coast and into the south west desert. We are going to connect with this enormous new reality we are both facing. We are going to meet our challenges with our individual and collective sense of adventure. I am going to meditate in the vortexes of Sedona, howl into the vastness of Death Valley, and find my edge on the edge of the Grand Canyon.
I am meeting this new decade with a commitment to my hysteria.
To listen to it, honour it, soften it, re-wild it, and heal it. I will honour the death I experienced by using it as a compass to seek out other great truths. I will radically make art and share stories all with the intention of bringing us closer to a wild world. One that does not need lines to define it.