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. I let it draw me inward as I explore a familiar feeling. Paralysis. Sure I could probably move but every pore pulses and screams, overwhelmed by the heaviness of the very thought of moving. Will this keep getting worse? Will I eventually become cemented in my own body unable to take steps in the directions I yearn for. I take a deep breath in and as I exhale I remind myself 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 2018 I started my year full of potent rebellious energy ready to launch a full scale attack against my worsening condition. I was diagnosed with fibromyalgia. An already confusing and disconnecting diagnosis that started sapping my energies around 2013. I finally saw a shore but I was still drowning and I didn’t know if I had the energy to make it. Perhaps it was easier to let the waves swallow me. Muffling my screams and turning them into gull songs and bubbling waters. Disappearing silently into the dark waters. But somewhere in there, something happened. Not a turning point or eureka moment – instead, an almost undetectable evolution. 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. While their births bring with them delicious new perspectives, the labouring in of these evolution often brought me to the brink. Throwing me off course in cruel ways. Yet something about it kept bringing me back to something so compelling and full I knew I was bound to chase it, understand it, and create it for the rest of my life.
Just a few days into 2018 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 images of labouring, giving birth, and babies. When I wasn’t dreaming about it, I was experiencing it 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 into every corner of my body. I begin to understand why doctors drilled into patients heads when they had migraines. I wish someone could 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. In those feverish moments, I was truly afraid that I had made myself insane.
My partner at the time managed to help get me to my family doctor. I had already learned I needed to be as cold as the four walls around me to get my doctor to hear me. There was no room for truthful expressions of what I was feeling here. 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 reflux”. 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. His diagnosis was comforting in its simplicity and in my weakened state, I accepted his prescription for stronger 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 there was still a chance that this was all in my head. I still find fragments of this hidden in the depths of my shame.
Needless to say, the pain did not stop. It was merciless. Now along with it, there was 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 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 carried and laboured out this pain. 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, and doubt. Between then and now, the evolutions, often packaged as immense losses, began to convince me of the power of my own intuition. Unfortunately life moves at its own pace and 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.
Every moment of my life passed through a lens of self-doubt and self-hate. I did not deserve to feel good because it’s my own fault for feeling so bad when I have the all this incredible privilege and love around me. So the blame went deep. So much so that it warped into an unrealistic view of who I was and what I represented. I threw myself into my new job and began repeating a 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 my loss and grief afforded me a clarity that wasn’t there before. I was still very sick and worse than that – I was definitely making myself sicker by continuing to try to live a life like the ones I thought would make me valuable.
I witnessed it all until finally my body collapsed. A liquid paralysis trapping me in folds of my bed. My capacity diminished and slowly I became unable to show up in the life I once knew. My body forced me to take a big pause. So I shut down everything non-essential around me.
The summer of 2019 I was bathed in the immense healing power of quiet. I spent hours outside just sitting and listening. To the bird, to my body, to my heart, and to my frequencies. Inbound and outbound. In this space, the hurt of the breakup grew louder and louder until it reached a breaking point and I pushed myself through and onto the other side. I was 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.
I also unfortunately continued to get a lot sicker. I found myself spending much more time in bed. I even worked from bed which meant that my day was usually 60-70% bed peppered. Sometimes even bathroom breaks are feats that require strength to be pulled from my very depths. I also 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. It felt as though everything in my environment has the potential to hurt me.
I turned to energy healing more and more and decided I wanted to take some formal training if only to give myself more of what I had already been experiencing. Once I started training, the most incredible things started happening. For one, I saw very clearly that my diagnosis was not complete and my family doctor would not be the one to help me. My universal healthcare system won’t help me. I can be grateful out the ass but I wasn’t benefiting from this system at all. 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 women of colour and other systemically marginalized groups in my same position. I desperately wanted to crawl deeper into my hole of being undeserving but I was angry enough not to.
Then a good friend (or soul sister, as I call her) sent me the video of a doctor in California who was practicing functional medicine but in a profoundly connected and forward-thinking way. 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.
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. Lastly, I wrote out my whole medical story. The story started with a seemingly insignificant concussion that happened more than 10 years ago but I only really got into the meat of my story from 2013 onward. This was challenging because of how compromised my memory was. A combination of my condition, PTSD, and a desire to detach from the unbearable process of coming to terms with why I lost my marriage in this fire. So I took my 287 page medical records from my doctor (which starts in 2013) and I slowly used that as a rough map to sketch out a timeline of my health. I included major moments in my marriage, my career, my personal journey, and of course all of my significant medical moments. 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 doctor wrote that clearly showed his bias; clearly showing me that I would need to be more cautious about my relationship with him. He was not on my side. 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 this through, I sent it all off and waited.
A day before my hour long phone call with the doctor in California where he would share his case review findings with me, I sat with a dear dear friend smoking a joint and I said to her – “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.” She not only held space for me – she took my hand and waded into the dark waters with me. Protected by the wisdom and positivity she had earned through her own health trials – slaying beasts you can’t imagine. It was a comfortable and even exciting space for her and seeing that made me get a little excited too.
October 24 2019. 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 you said and will say to 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 Fibromyaglia 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 emotional challenges to your fatigue, pain, tremors etc. – not your fault. 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 dear and close friends and share this story with them but my energy is as precious as a rare gem and I am honouring that despite the discomfort in sharing my story in this way. I’d also like to give you 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 was diagnosed as hysteria.
– in 1970s/80s they changed the term to conversion disorder but essentially it was the same thing – just cleaned up.
– to this day, women in particular 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 #missingmillions.
– only 6% of medical schools in the USA acknowledge the existence of ME.
– 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.
– ME that affects the brain is scary AF. The stories are infuriating, isolating, tragic, and hard to hold.
Despite how heavy my heart as 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 be 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. Of my own magic.
My new world is wild, untamed, angry, rebellious, intuitive, and powerful. A circle in a world drawn in lines.
Here I am. Hands and eyes glued to a window on the 31st floor asking me not only to endure the sights of what these floors are built on but to embody what I see. Pain, chaos, abjection, privilege, money, growth, othering, divide. My body folding in on itself as it feeds off these truths. My gift. My burden. Lessons. Lots and lots of lessons. Bringing me closer to my own truth.
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 auto-immunity works. After that week my dad, who serendipitously retired early, and I are taking a road trip from San Fransisco to Los Angeles and then LA through to Arizona and Nevada in a camper van. We are going to the desert to connect with this enormous new reality we are both facing. We are going to meet our challenges with our 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 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. I am fortunate to have an incredibly powerful support system around me made up of my familial wolf pack, my soul sisters, my coven of hysterical femmes, friends (those lost and those still present), acquaintances, fans, cheerleaders, and a very dear friend who I once called partner but can now with a full heart call family and friend. Your capacity for my underworld journey is inspiring. I have never felt so grounded in gratitude, love, and light. While I won’t be using my personal platforms to share my twisted little artistic creations, I will direct you to their hiding spots.
To creation! To women who live like the wolves! To hysteria!