not the death I was expecting {part I}

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. I’ve kind of dissociated from goodbyes now. The pain of knowing that it will likely be years, if ever, before you see them again is best avoided. But the timing of it all felt surreal. Like I was living in the 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 in the quiet magical space I had brought from the outside and grown inside my small room. I feel the softness of my blankets between my fingers and toes. The imagined warmth of the sun on my skin. While 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 it makes a beautiful melody. Something that may never have happened if it weren’t for my familiarity with the cycle of grief that immigration so consistently provides.

I’m tired. Lying down. In the same bed where my aunts tears dried on my arm not two months prior. In a room of my own making now adorned with rocks gathered in the south west deserts.

When I look at this once peaceful sanctuary, I feel an uneasiness deep in my belly. The energy is stale despite all the newness. That warm glow that hung around wasn’t there anymore. I was entering into this space freshly reborn and uncomfortable as all hell. I didn’t know how to comfort this uneasiness.

“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 churn, bubble, and begin to rise up in my throat. Suddenly my room felt small. Too small. I missed the vastness of the desert where a scream was nothing but a vibration rippling into a space wise enough not to be frightened by the hysteria. Where years of fallen tears dried out in the hot sun.

Then I remember the pledge I had made to myself before leaving – 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.

I look to my guides for the answers. Intuition, death, and hysteria. Things I pledged myself to in order to find answers. So that is where I will begin to unravel for you the grief I am feeling inside, because that is where it all began.

With every mile pulling me further from home, death 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. My body may have been pushing along the route of the California Zephyr but my soul was on a different train; running somewhere between Guadalquivir and old Seville. I had not seen or felt what awaited me yet but I was kept in motion by the inevitability of a meeting point between the two trains.

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 until it finally sets down in 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, perhaps, 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 I encountered the strangeness of train travel, I thought it was because I was by myself but I soon realized that this was simply what others knew as the dining car etiquette. We were always seated to fill a 4-person booth. Meaning, I always ate with strangers. Besides one guy my age glued to his laptop and a couple of young parents trying to get their young children and selves fed while the grandparents regaled surrounding diners with somewhat mundane stories of their lifelong adventures in train travel, 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. The tables looked like small model refugee camps made up entirely of individual sized packages of ketchup, mustards, jams, and various other condiments and eating utensils. While I tried to silently negotiate a treaty between my thighs, the thighs of my neighbour, the vinyl seating, the jams became a strange symbol of our utter discomfort around the intimacies of a shared space. Each preciously packaged for individual consumption and taste. Diluting an already tasteless drink.

Someone inevitably breaks the silence with some repeated observation about the diminutive 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. A surprisingly short walk from individually portioned condiments. 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. Fuck you Sandra! I hope your tea was steeped in the shit water of those gender-neutral washrooms you feel is such an affront to your personal freedoms.

Their bigotries were as quiet and polite as the people sprouting them. Still – the aches and pains in my body and mind are not 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.

Then 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. While these polite bigotries certainly play a fundamental role in a more 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 has diverged so vividly, that it was meaningful getting to witness it in its natural habitat; 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.

Love arrives
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 while I wasn’t quite sure why, I was intrigued. I was sick of sitting in the stale energy of the dining car passengers and what they scratched at inside me, 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 might even be excited. But that could could easily have been my newbie energy.

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 was living 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 her 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 and love, 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 said something like, “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 the way you do might help them understand” I give her another hug but this time I hold on a little longer. Gratitude. We are exactly where we are 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. The train ride will eventually come to a close.

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 slipped into something with wilder and I was ready to let her have some fun. I watched her playfully perform all the same blocking as the other white bodies, sweetly lulling them into safety with the intoxicating aroma of small pleasantries – waiting patiently to prick them with her thorny nails. Reminding them that even a perfect rose picked, will make someone bleed. Very good, the woman exclaimed as she looked at the plate I ravaged. “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 disease to give you a healthy figure” I linger just long enough to catch the making of their expressions and then walk off with an extra little twist in my hips. I never did like 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. I suddenly feel exposed and alone. Then the wind runs its fingers through the fur on my arms. No need to be afraid, Toni.  Tricksters love the wind.

to be continued…

  1. *1 “Touched by an Angel” by Maya Angelou. Please note 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 Queen Angelou knows how to spin word gold.


  1. You are a courageous woman, Toni, and such a wonderful writer! You had me in tears, especially with your beautiful writing of your experience with your aunt B. Thank you for sharing your gift with us. Xx


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