my mind has played through many stories. my body played through a couple of household tasks. but each time I glance at the clock I see that it’s only moved along by 5, maybe 15 minutes. it feels strange. strange enough that I don’t want to give it any other name but today. not Tuesday or Wednesday. not the 15th or hump day. just, today.
it reminds me of those summer holiday afternoons of childhood when everyone in the house would be taking a nap after a day at the beach or, if we were at the Kruger National Park, after we’d been out since 5am going on game drives. everyone would be asleep except my uncle, who would be outside on the porch smoking a cigarette, watching the minutiae unfold. he never read or listened to music. just sat there watching the world. back then, my world was small. so when everyone in the camp would be taking a siesta, it felt like time was standing still. like the whole world was taking a collective pause. the only sounds would be that of deep sleep-filled breaths, birds chirping through the dry heat, and the flap of sheets on the laundry line.
it felt like I was being shown another layer of existence. one most people sleep through. the layer of stillness.
I moved quietly and stealthily through the house. seeing it’s dark corners and intricate decoration in a new way. there was an edge of danger to it. i’m not sure why. it could be because there was always only a thin layer between me and my fear since I can remember. a natural fear that can comes from growing up in South Africa. but as scared as I felt, I also knew it was a part of my job to keep everyone safe while they slept. they were the thing most important and most worth protecting. so I would move in hidden and creative ways to make sure no one could follow me with their eyes or ears. my heart beating rapidly in my chest. sometimes the fear would win and overshadow the magic of the house. by the time someone else woke up and noise begun to fill the air once more, I would be exhausted. I would find the nearest couch and sink into the warmth of playful domestic bickering building around me and sleep.
but sometimes the magic won. the stillness would stretch and grow into something incredible. sitting outside in the grass, I could feel the flowers growing between my fingers. I could feel the wind sending barely detectable messages through the air. a muffled laugh. an empty can rolling along the sidewalk reminding me of the earlier busyness of the road. a waft of cooling fat from braai meat cooked earlier that afternoon. the far off hum of a jeep briefly dipping into the soundscape only to fade away again. in other words, nothing urgent to report today. I loved sitting in the grass. ladybugs crawling onto my legs tickling the little hairs.
the energy of the quiet house spoke a truth to me. without all the distractions and noise. I felt like a natural extension of the nature around me. if someone did intrude or threaten the house, I felt safer knowing that nature would be on my side. even as a child I had a streak anarcho-naturism in me.
but today. today has a bit of that energy. the energy of a sleeping world.
I’m sitting on the worn out couch in the sunroom, looking through the screen door at my mom in the heated pool built into the deck. the sun is shining and I watch as she closes her eyes and begins to relax. her worries melting into the steam coming off the water. I imagine them turning into the fluffy white clouds above her and drifting away on the wind. there is a breeze outside and I know it’s a frigid one but because I am in the warmth and I see her in the sun, it feels like it could be summer. one of those perfect Sunday afternoon summers where the world goes quiet for an hour or so.
I do feel the low hum of drums in the distance. reality. existential dread. the frigid wind. I feel a slight pang in my chest. he would love nothing more than to aim his hammer at my vision of today.
so I pause. retreat into the stillness a little more. make myself hidden.
look at her face. look at her kindness and open heartedness. look at the beautiful shape that has come from a life that’s been around longer than mine. look at where she softened. where she hardened. where she got chipped and where adornments were added. we have lived many stories together, my mother and I. the stories of South Africa. the stories of Canada. the stories of depression and pain. the stories of hysterical laughter. truth. history. heart. soul.
this will not just be another story between my mom and I we will all remember this moment in time forever. we are all in this story
Grief curls inside me like the yellowed corners of aging drawer liners. Discomforting in its persistent slowness. The temptation to violently rip it off gnaws at my finger tips impatiently. When I left on my journey to California (and beyond) I didn’t imagine this outcome. Others may have. But I wanted to keep sacred my new awakening offered to me in this diagnosis. The opportunity to shed what no longer served my purpose. More than anything, I saw this trip as fulfilling the dual purpose of a potential reconciliation with western medicine and a burial for the death I experienced. I wanted to heal what had been a tumultuous and traumatizing experience by giving myself permission to trust a doctor and let him educate me further on what was going on with my brain. If in that exploration we were able to give me better management strategies or relief, that would be a bonus. So while others inserted bigger hopes into my waiting days, I sat quietly in my room, spending as much time as possible in a type of loving awareness where life feels fluid, long, and full of magic.
I think about one of my final days before I left. The energy in the house was like that of a waiting room. Family gathered together awaiting a goodbye. My aunt and uncle were returning home to South Africa after their two week visit. By now, I’m very familiar with goodbyes and yet each time it strikes me in a fresh way. Adding nuance and depth to the experience – knowing that it will likely be years before we see each other again. The timing of it all felt surreal. Just days before my own departure. Like I was living past, present, and future all at once. While I stay loosely tethered to my South African family through the gifts of the internet, each visit only reminds me of the depth of connection I feel when I share a physical space with them. Their energies oozing a sense of home. I miss them. I miss South Africa. While everyone participates in the ritual of waiting out the final hours together over coffee and homemade rusks, the emotion of it hangs heavy in my bones and I retreat to my little room where I can languidly let them wash over me. I feel the softness of my blankets between my fingers and toes. The imagined warmth of the sun on my skin. While my sadness washes over me I also begin to feel the euphoria of a life well cultivated. I spread those feelings out like a thick layer of butter over crusty bread. Focusing on the sensuality of sadness. Tempting out the larger perspective of the inevitably of loss in love and how many lives have been made richer by experiencing the underbelly of this particular paradox.
Then I hear a little rap on my door. My aunt B approaches and asks if she can step into my sanctuary. Her understanding of my space makes my insides smile and I welcome her in. She shuts the door behind her and asks with the utmost respect if it would be okay if she said a prayer. While we have always shared a closeness, spirituality was never really a connection point between us. My experiences with Christianity left me feeling a combination of anger, injustice, shame, and impatience. Yet in this particular moment, the idea of a prayer (something I haven’t done since I was a child forced to in Sunday school) felt comforting if not a bit strange. My only condition was that I be allowed to join her. I felt a little unprepared at first but when she embraced me, I felt my breath return and I relaxed into her warmth. I held that embrace tightly and perceiving my readiness she began her prayer. I’ll keep private the particular words she shared that day but I will never forget them or the feeling of her tears on my arms as we continued to hold each other. She wanted me to be cured and to be free of my cage. I quietly translated this as the unique poetry of her pain. Born of confusion and grief, not just over my circumstances, but the circumstances in her own life which has brought on loss and pain. As much as she was holding me, I was holding her. I felt strong knowing that one of the gifts I received in all this was being able to sit with others comfortably during painful moments. To symphonize my pain with someone else’s pain and find peace in the truth of these moments. Something that may never have happened if it weren’t for the loss of “home” and the cycle of goodbyes that immigration so consistently provides.
Now it’s almost two months later and I am back where I began. Returned home from my journey. In a room of my own making. But when I look at it now, I feel a sickness deep in my belly. The energy is stale. That warm glow that hung around turned out to be me, not the room, and I was entering into it freshly reborn and uncomfortable as hell.
Your biggest challenge now will be convincing your brain that you’re okay. Which means you cannot think about things the way you used to. The tools that helped you get this far in your healing, now have the potential to undo.
The doctor’s words rang in my ears like cathedral bells. Powerful and deafening. What the fuck am I supposed to do now? I felt that unquenchable scream rise up in my throat. Suddenly my room felt small. Too small. I missed the vastness of the desert where a scream is nothing but a vibration rippling into a space wise enough not to be frightened by the hysteria.
My guides. Death and hysteria. Things I will always need to return to to find answers. So that is where I will begin to unravel the grief I am feeling because that is where it all began.
With every mile pulling me further from home, the death I spoke of felt all the more real. Each new sight, sound, smell, and taste becoming part of the ritual in preparing the dead for burial. Preparing myself for burial. A ceremony made all the more strange by performing it on myself – a living being. Well, that’s not quite true either. I was in purgatory. Undead. I had not seen or felt what awaited me yet. I was preparing to say good-bye and creating space for something new without really knowing what that would be.
The burial began with the rhythmic drumming of metals as they worked us from one destination to the next. Pushing us steadily from Chicago, over the mighty arm of the Mississippi River, into the vast Nebraska flatlands, through the snow-covered Rockies, up the Sierra Nevada and into Oakland, California. 52 hours. Given how long the train ride would be, I opted for a roomette. A small private compartment with two chairs that easily convert into a bed, 3 square meals a day in the dining car, shared washrooms and showers, and a dedicated car attendant. No wifi. No cell signal. Since the dining car meals were included in the price, I always opted to eat there despite the strangeness of it, and later – because of the strangeness of it. Being present in your half-life gives strangeness a new appeal. You are both there and not there. Present and absent. The first time it happened I thought it was because I was by myself but I soon realized that this was simply the dining car etiquette. You were always seated to fill a 4-person booth. Meaning, I always ate with strangers. Besides one guy my age on his laptop (who I never saw again) and a couple of young parents trying to get their toddler, baby, and selves fed while the grandparents befriended everyone, the typical age of the dining car gang was well above 60. With each meal, I would take a moment just to soak in the ridiculousness of a pack of soft white bodies sliding ever so obediently into booths, passing down large slips of order paper and menus to each other. Timid smiles and polite nods all communicating varying levels of amused discomfort.
Someone inevitably breaks the silence with some repeated observation about the size of the condiments or the surprising quality of the food available. By dessert, I am frantically waving over the dining car attendant to cancel my order, or put it in a to-go container as I try to politely but swiftly exit a conversation headed for Trumpsville USA. There is nothing as potent as a bunch of white people feeling so utterly safe in their own views of the world that politeness and rule-following become a well-honed performance of their privilege. It was uncomfortably familiar and made the urgency of my exit visceral.
I find my way back to my little compartment and let the solitude ground me. Then the guilt seeps in. Should I have said something? Used it as an opportunity to represent my social politics. Their bigotries were as quiet and polite as they were. Still – the aches and pains in my body and mind might not be a good enough excuse not to say something. Discomfort is not a good enough excuse not to. There is so much inside me not yet reconciled. Not dead or even dying. Just sitting there, some diseased, some healing, and some waiting for judgement.
The wheel turns again. Reminding me that even purgatory has its paradoxes. Perhaps it wasn’t the escape from it that grounded me. Perhaps it was simply being able to safely witness something up close that was uncomfortable. Now this would definitely not extend to witnessing violence, cruelty, or injustice. While these polite bigotries certainly have the potential as precursors for escalated abuse, I am not truly in a position to make that judgement call about the dining car passengers. My own background has at least shown me that. But here I was given access to a way of thinking, from which my own diverges so wholly, that I rarely get to witness it anymore without the noise of rage politics and divisive memes telling me to respond with hate or get out. While I still feel unreconciled, I remind myself how tethered my own healing is to my ability in finding an authentic expression of my values as they concern those who face disproportionate and cruel injustices, and right now, I don’t have capacity for dinner table politics nor do I know how effective or authentic they are to me. Instead, I sit in my little compartment tethering my shame, doubts, guilt, and exhaustion to love. Love for myself, love for humanity, and love for paradox.
and in its train come ecstasies
old memories of pleasure
ancient histories of pain.
Yet if we are bold,
love strikes away the chains of fear
from our souls.*1
After restlessly bobbing in and out of sleep, I wake up to the sound of the train stopping. Oh yes! We have a 5min platform stop where we can stretch our legs. As I rise to exit, I feel a lead-heaviness in my legs and realize that at best I can probably just stand by the door and take in a few gulps of fresh air. I grab onto the sides of the train car and stumble down the short corridor until I reach the doors. We are stopped on the platform of a small train station in a mountain town I had never heard of. Remote and hard to believe that people not only live there but that a train station still makes sense. As I dreamily imagine my own version of living that life, I spot some movement next to me. There, on the other side of the car also stumble-walking towards the door, is a woman 20-30 years my senior. I tentatively offer her my arm and then in my embarrassment rattle off some joke about not being of much help because I have the body of a 90 year old. I see the glint of recognition in her eyes and I sort of blurt out that I have a chronic pain condition. Me too, she says. As it turns out, we have the same one.
We, unaccustomed to courage
exiles from delight
live coiled in shells of loneliness
until love leaves its high holy temple
and comes into our sight
to liberate us into life.*1
The train pulled away and we stood there awkwardly clutching the metal siding that lined the inside of the train car. We didn’t want to break conversation but both our bodies were beginning to feel overexerted by standing for too long. I could tell she was assessing me and I wasn’t quite sure why but I was intrigued by her energy so I offered to keep her company in her compartment. To my delight, she met that suggestion with a big smile and led me to her little abode. From there our conversation took on that same surreal energy I had become so good at teasing out of life. We weaved between our stories with the ease I have only found in other chronically ill people. We aren’t frightened when we’re together. We are looser, less guarded, and at ease with our varying degrees of disability. Newbies are excluded from this because in the beginning it’s hard and you can’t expect someone to just immediately embrace something so complex and devastating. It takes a lot of time
She was no newbie though. She was a veteran in this war and her biggest tragedy was domestic – as they usually are. Her children did not understand her illness. They saw her rejection of traditional western medicine as a threat to her well being and despite their good intentions, a painful divide happened which left her all but estranged from her own children. She had moved somewhere more remote and slowly built a life as stripped of the artificial and synthesized as possible. She educated herself on chronic illness as it related to food, environmental factors, the effects of different types of energy, and some of nature’s other suppressed remedies. Now she was on a journey to reunite with her family after a 10+ year separation, prompted by her son reaching out and wanting to make amends. Part of the reconciliation was for her to move out of her forest retreat and closer to them. She was justifiably scared and doubtful. She knew she was likely sacrificing her health for this reunion and yet that wheel drew her closer to the reconciliation. I shared with her my belief in the magic of falling into the cracks of life. The exquisite pleasure in trusting that you are exactly where you are supposed to be. Embracing your circumstances as something more than just oppressive forces reminding you of the unfairness or tragedy of human existence. Especially when that magic puts you in service of love.
We are weaned from our timidity
In the flush of love’s light
we dare be brave
And suddenly we see
that love costs all we are
and will ever be.
Yet it is only love
which sets us free.*1
Her defenses were something to behold. A strong and proud woman who has carried the burden of a multi-layered pain for a long time. Her most defining characteristic though – she was a fighter. Not all her choices were fair or unselfish but she committed to her hysteria in the way she best knew how. Hearing her story I felt my aunt B’s embrace, her tears on my arm, and I felt that strength again. There is nothing so intoxicating as bathing in the complexity of a human life and through gratitude, feeling privileged at bearing witness to one so delicious. Sit with her and let her be her and let you be you and trust that you are exactly where you are supposed to be.
An hour before she reached her stop my body began to cry for solitude. I was at a loss for words when it came to saying good-bye so I just asked if I could hug her. After she hugged me she held onto my hands and thanked me. Wetness accumulates in her eyes and she says, you have made what was going to be a very difficult journey so pleasurable. I wish I could’ve recorded our conversation and played it to my children. Hearing a young intelligent person talk about being sick in this way might help them understand. I give her another hug but this time I hold on a little longer. Gratitude. She is exactly where she is supposed to be and we are not alone. As I stumbled back to my compartment I felt a profound sense of warmth inside me. I popped out of my compartment again briefly just to see her off at the platform and when she was gone, my arrival in California started to feel all the more real. Her departure reminded me that we will not be staying in purgatory for much longer. We have been moving toward a change and soon we will arrive.
I slept restlessly that night as the energy of the day pulsed inside my veins, not yet ready to integrate. When I woke up the next morning I was incredibly centered and basking in the glow of the courageous act of human connection. I shuffled up to the dreaded dining car and without any trumpets sounding or big “ahas”, I instinctively shifted into something more natural and a little animalistic. My last lunch was still strange, but I had shifted back into my authentic self and I was ready to let her have some fun. I committed to performing all the same blocking as the other white bodies, sweetly lulling them into safety with a sweet and intoxicating aroma – waiting patiently to prick them with my little thorns. Reminding them that even a perfect rose picked, will make someone bleed. Very good, the woman exclaimed. We have another member of the clean plate club. Now you can get a dessert. You can certainly afford to with such a healthy figure. A coy little spark lights up the corner of my eyes. I stand up and place a couple of dollar bills on the table for the attendant. Yes. I say. There is nothing like an autoimmune disorder to earn you your dessert. I linger just long enough to catch their expressions and then walk off with an extra little twist in my hips. I never liked clubs.
When the train pulls into my stop in Richmond just outside of Oakland, I stand on the platform and let the wind curl up around my skin. No need to be afraid, Toni. Tricksters loved the wind. It gives them an excuse to play.
to be continued…
*1 “Touched by an Angel” by Maya Angelou. Please note the order of the verses are not in the original order by design. I encourage you all to read the poem as it is originally written because damn that Queen Angelou knows how to spin word gold.
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 and 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 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. Their births were painful. Sometimes throwing me off course in cruel ways. But always 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 of 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 stay positive for them. 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 my back, into my ovaries, running down my thighs and then back up to my crown. Like a thick liquid spreading pain 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 thick 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 – to make me hysterical.
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 everyone around me recognizing my condition, I believed there was still a chance that this was all in my head. I would carry fragments of this until Dec. 30th 2019, just 2 days ago.
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. Often at great expense to myself. I was trying to make up for a guilt I felt around my privilege. The privilege that allowed me to be in paralysis for so long. Another way to blame myself, my history, for keeping myself small, and sick. 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. I did not feel like I was participating in this repeat. I felt like I was witnessing it. Like I was supposed to be stripped down to see something very important. 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 was seeing around me. So I started working on my boundaries and a new vision of what a life could look like for me.
The summer of 2019 I was bathed in the immense healing power of having stability for the first time in a long time. The hurt of the breakup reached a breaking point and I pushed myself through and onto the other side. I was financially independent – even if on a very small income. Largely because paying rent at my parents house comes at a fraction of the cost of living in an apartment. But I insisted on paying for everything myself nonetheless in an attempt to heal my relationship with money and ultimately my own privilege. This is ongoing and difficult work but incredibly worth it.
I also got 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 with small movements to the kitchen and the bathroom, walks with my dog, swims, and the occasional day at work or night out with friends. 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.
I turned to energy healing more and more and decided I wanted to train in Reiki if only to give myself more of what I had already been experiencing. I promise to share more on this later. 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 systematically 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 is. A combination of my condition, PTSD, and a desire to forget the unbearable pain of losing 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 systematically 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 a decade of creation! To a decade of wolfish hysteria!
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