I’m unsure when it started, but I have felt tenderness and a dull ache in my testicle for the last few days. Naturally, this has set off every alarm in my mind; every possible worry and concern has crept back into the light. After four years, I would have assumed that the fear of a recurrence would have lessened, but it has come raging back with this feeling. The other night, I dreamt that I was back in the treatment chair, and the nurses were trying to fit in an IV. Each nurse attempted dozens of times to no avail. Finally, the nurse, who, in waking life, I see every time I go for labs, said, “Jeremiah, I’m sorry, but we can’t fit the IV. We’ll try again tomorrow.” Then, I shifted dreams, but I am unsure what followed. In my unconscious mind, these worries are ever-present; they have always been. It isn’t just with this feeling and sensation. My dreams regularly reveal so much; every emotional state, good or bad, is magnified tenfold within my dreamscapes. I dream journal. I try to do so every day. I have stopped writing out the dreams in a descriptive manner. I don’t set out to write short stories-like entries when I awake with one still fresh in my mind. Instead, I pull imagery from them. I snag tidbits of information, perhaps the color of an object or a particular look I receive. However, with the dreams that revolve around cancer, I am tangled up in internal sensations and feelings more than anything external. Something in the dream mentioned above, which has occurred in various iterations for years, prevents me from being treated. I want to hang on, stay within the dream, and ride it to the end. Would it make sense once I got there, wherever there is? What answers would I receive? Would it make sense – would any of this make sense?
I have dreamt dozens of times that cancer has returned. Not testicular cancer, not necessarily, just cancer in general.
The other night, I awoke, and, having fallen asleep on my arm, it was numb from the shoulder down. This, too, has happened numerous times, but I am always so shocked and horrified that I sit straight up in bed each time, flop my numb arm over my lap, and await as it comes back, as it awakes as well. I hold my breath. In the middle of the night, I sit in the dark, cradling my arm and waiting. When I feel the gentle tingling sensation return, the soft pins, and needles that signify it has awoken, I lie back, relieved. It is then, and only then, that I realize (the) cancer hasn’t returned. Another lesion hasn’t formed in my brain. I don’t need brain surgery.
Incidents such as this are not uncommon. This is but one example…
This fear lurks; I feel as though sometimes it is stalking me. Other times I know that, at this moment, I am cancer-free, it is out of my system and a thing of the past. I am torn between these two worlds of quaking fear and joyful bliss.
I recently had a conversation about this very feeling, about how I feel that I am often shadowed by cancer, that it is pursuing me. I was unaware of its presence upon initial diagnosis. When struck by the recurrence, I was completely oblivious as with the first time. So much so that when my oncologist told me it had returned, I was in denial. Naturally, anyone would be dismissed, as this is the last thing one wants to hear after being treated once. When I was informed, I felt 100%; my body felt so strong and healthy. I wouldn’t believe it – I couldn’t accept that it had returned. Regardless, it had, and both times it snuck up on me and pounced. I blinked, and it was upon me; claws sunk deep, and I was helpless.
I suppose this is just something that lingers. How long is uncertain. Perhaps it will always shadow me. I hope it will do so in such a way that it is not hunting me, or for that matter, haunting me, but a reminder of what has come to pass.
Patience! I need more patience with myself as I move along this path.
I arrived early at the Bourgeoise Pig Cafe, a small tea house in Chicago’s Lincoln Park. I was anxious, more so than usual. After the calm of coastal Maine, Chicago’s busyness was unnerving, and the news of my recurrence made every part of me tense.
I had to return! I postponed the treatment by a week so that I might see my then-girlfriend. My illness arrived when our relationship was in its infancy. As such, we clung to one another, even from afar, trying to come to terms with the storm that had just hit. But that’s a story for another time, perhaps only between her and me.
I ordered a panini and tea and then slipped off to the bathroom to gain my composure before Jose arrived. I always felt this deep connection to Jose. He was a mentor, an older brother, and a performance art partner. More than all that, he was just a dear friend whose very nature was comforting and gentle.
We met at the Bourgeoise Pig Cafe because I wasn’t ready to travel north to Edgewater. It was only a matter of several stops on the red line, but I couldn’t do it. It would mean passing by the L station where I had my initial seizure, where everything began, and my life changed. I hadn’t been there since the incident; I hadn’t even returned to Chicago.
That particular L stop has returned to me in different forms of daydreams or mental images. It came to me today, which is why I wrote this post.
I am not sure how it appeared or what stirred the memory. I suddenly found myself between my apartment and Thorndale, the station just a few stops from the redline’s northern terminus. I stop and take it all in when I find myself in these places of reflection. In my opinion, letting the mind drift away in these moments of reverie is healthy and natural. I think we have misunderstood this notion of mindfulness. With all our apps and smartphone reminders telling us to “be here now!” we are struggling and even feel guilty for letting ourselves drift and be open to allowing our minds to enjoy their natural ability. Being fully conscious of where one’s thoughts are and where they are going is very powerful. I became very aware of this while inpatient during my back-to-back stem cell transplants. My confinement within a sterile room for weeks and being all but bedridden would have proven far too significant an obstacle. Consequently, I allowed my mind to go — consciously permitting it to be like a balloon, one tethered to my hand but floating above, being pushed about by air currents, etc.
Today, those currents took me back to Chicago, and I found myself between my apartment and the Thorndale L stop.
I admit I feel lucky When I look back at one particular event from that day. I know how strange it is to say such a thing, and perhaps it isn’t even the right word in this context. Though, to say I feel blessed conjures up far too much. I am thankful for my childhood and having been raised catholic. Having a spiritual-based upbringing allowed me to explore religions as a whole – global religions, all of humankind’s beliefs. However, blessed, even with etymological roots that far transcend those I associate it with, still conjures up notions that are so intrinsically linked to my upbringing that I can’t put them aside.
My mind brings me back, and I return to that day. I watch myself. I see myself on the street full of children on their way to school and commuters heading to the L stop. I feel the late March sun on my face. I hear the traffic that stops and proceeds and stops and starts again as the lights rhythmically change. Where am I? I am across the street, waiting for the light to change so I can cross the road, but in no real rush as the sun is far too gorgeous to be concerned about much of anything. No, I am watching myself inside the cafe on the corner of Thorndale and Broadway. I enjoy mug after mug of comforting dinner coffee served in thick-walled cups. Wait, I am a boy passing by, laughing with his friends as they rush off to school. We have postponed going, bewitched by the March sun; we have lost all fear of the repercussions we might pay for being late. I am in the car, stopped at the red light. I’m sitting, engine idling, whistling slightly off-pitch to a pop song on the radio I’ve never heard before. No, I am the businessman, elegantly dressed, coffee in one hand, briefcase in the other, ready for the day.
I am watching myself. I have returned here a dozen times and taken on numerous roles. Each one is fully aware of what is happening or, instead, what will happen. Standing across the street, preparing to cross, the man has forsaken the glorious sun to watch me instead. The man in the cafe stands up to observe. Usually, he stops for nothing, especially on his morning commute; the businessman halts midstride. The boy, who has forsaken the bell and the consequences of his tardiness, stands still. The man in the car doesn’t care about the line of cars behind him; he follows my every step.
It’s horrible to watch; it sickens us and turns our stomachs. It never gets easier. We are witnessing ourselves in a place of such fear. We know now what is happening. It has happened so many times since. Then, however, it is the first time, and each embodiment feels it. We cringe as our body stiffens into such an unnatural and horrific form. As our physical self contorts and breaks and releases some ungodly howl. And when we fall, when our body cannot hold itself, we recoil at the sight as our beings’ weight hits the ground so hard we bruise our very bones. But even as each one of us wants to look away or even wretch at the site, we say, “Thank you.” It isn’t for the years of pain that will follow, of absolutely not! We now understand what could have been – what very well could have been – if we made it to the station, up the stairs, and to the platform.
The Thorndale red line stop is narrow; a few adults could link arms and span its width.
On that horrific day, I was roughly a hundred steps from this station: a hundred paces and a short flight of stairs stood between me and the platform. I can’t help but wonder. I cannot help it! Perhaps it was the crosswalk that impeded my journey? Did I have to wait that long for it? Maybe a rambunctious school child, delirious from the fresh air, bumped into me and slowed me down? Or that businessman, walking with beeline precision, forced me to sidestep. Or… or what?
But I didn’t make it to the station; I didn’t make it up the stairs or the platform. Had I, what then? Had I had a seizure on the platform, would the tracks have swallowed me up? Would I have fallen inwards towards the center of the narrow platform, towards safety? Or outward… outward and downwards; downwards into the train’s path or onto the tracks housing 600v of electricity?
But I didn’t; I didn’t make it to the station, up the stairs, or to the platform.
During the same trip, I did manage to go up to Edgewater. I prepared myself for the stop at Thorndale. I was white-knuckling the seat, only realizing how intense I must have looked when I met another passenger’s gaze. However, the L will often run trains express, bypassing several stations. The train I was riding ran express from Berwyn to Granville, one stop farther north than Thorndale, thus avoiding it altogether.
I took a Lyft back to Lincoln Park. I wasn’t ready. I intended to take the red line south but exited the Granville station.
Maybe I’ll never be prepared to return to this particular stop. Or, if I do, Jose and I will grab paninis and tea at the cafe and enjoy them on the platform. Maybe we’ll sit in silence. Or perhaps we’ll talk about the things we each feel blessed for.
Our situations were identical in almost every way.
He was diagnosed with testicular cancer. His staging was the same as mine. He, too, experienced a recurrence that presented as a brain lesion and opted for a stem cell transplant.
This is where our paths split apart. Shortly after his high-dose chemo treatment commenced, prepping his body for the transplant, he became increasingly confused and disoriented. After sets of scans were performed, it became evident that, though the heavy rounds of treatment were well underway, several more lesions had presented themselves in his brain. The decision was made to stop treatment and return home, enter hospice care, and be around loved ones. Shortly after he decision was made, he passed away.
Even in writing this, I don’t know where to begin opening up my emotional state regarding his journey and mine and where they veered off and split from one another. I shudder thinking about the fact that my lesions could have multiplied, too. Or, for that matter, the one that did present itself could have been in such an area that it was deemed inoperable, leaving me with more complications than just a stroke and a paralyzed arm. (“Just a stroke…”) What damage could my tumor have caused had it been slightly to the left, to the right, etc? Was I naive to postpone my 2nd round of salvage chemo and head out to visit Dr. Einhorn in Indianapolis to get a second opinion? Was this delay dangerous in such a way that… it’s too much to think about.
These questions haunt me. They wake me in the middle of the night. Even more so is one I can’t escape asking repeatedly: why am I here and he isn’t? Why am I alive and he … and he isn’t?
I never understood survivors’ guilt. I had heard about it but never truly understood it. Yes, on a larger scale, anyone who survives cancer thinks about all those who haven’t and, in one way or another, has that feeling. In most cases, guilt might be too harsh, but this particular scenario is apt.
I loop my posts back around. With my last sentences or so, I always seek to return to the overall idea. Is this good writing? I’m not sure. I do so to keep everyone along the way. My writing tends to drift a little far out, so bringing things full circle will hopefully lead people to say, “Oh, now I understand why he wrote…” However, with this post and the subject matter herein, I can’t. How do I bring this back around? What closing line or thought can I inject here? Nothing can sum this up or deliver on one’s need for coherency as none of this makes sense…
Perhaps this is survivor’s guilt. Maybe it isn’t so much about feeling remorse for those who have passed at the hand of this insidious disease, but rather the inability to make sense of it, to articulate it to ourselves and others. As with this post, I want to bring it back around so it feels wholly desperate and there is some understanding to accept the madness of this life and the injustices that rear their heads. But I can’t. Everything is left hanging, nothing but loose ends, dangling strands that I keep tugging at…
This summer will mark the 3rd anniversary of my stem cell transplant! It is hard to believe that so much time has passed since that long and very trying span of time, from June to August of 2017. So much has come to pass; so much growth on a personal level, so much understanding and acceptance, so much physical and emotional healing.
Even if I look back to just half a year ago I am left scratching my head asking, ‘who was that?’ I suppose this is normal, but I am hyper-vigilant of the passage of time, as I’m sure every cancer survivor is. It isn’t so much that I’m counting every second and rejoicing at every tiny gulp of fresh air I am graced with. No, it isn’t like that. Naturally, I am very lucky. However, I feel graced with, if that’s still the most suitable term I want to use here, with the awareness and shifts within myself. Call it “soul” or “spirit”… whatever word you’d like, I won’t label it so as not to taint one’s vision of how I’m perceiving this “inner” part.
Several months ago, I was experiencing a nervous breakdown and was admitted to a hospital in France. Really, who was that? I needed that, of course. I needed to bottom out. My body was already working on slowly repairing itself, but I hadn’t yet allowed myself to crash on an emotional and psychological level. My inability to hold on slipped and I did… I crashed hard – very hard. As difficult as it might have been, this was when the shifts began to occur.
3 years ago, I was watching fireworks from Massachusetts General Hospital’s cancer ward. I tried to sweet-talk one of the nurses into getting me a beer so I could, like a lot of my fellow Americans, sit and sip a beer while watching the display, all the while exclaiming, “Ohh!” and “Wow!” She said no and gave me another anti-nausea med and an ice cream. The fireworks didn’t live up to their hype. I heard good things; a lovely display of colorful explosions seen from the 10th floor of a building overlooking the Charles River. It sounded amazing. Though various buildings obstructed our view, we couldn’t see The Charles. There were perhaps ½ a dozen patients and nurses. It was an interesting and also eerie sight, all of us in masks and gowns; the patients seemed quiet, in that middle ground of toxicity-induced psychedelia and being fully present. I shouldn’t generalize, but I often found myself in this state, always ready for what I am unsure. All of us were tethered to our IV poles, which pumped an alarming amount of chemo agents into each of our bodies or flooded us with other various fluids. The nurses talked amongst themselves, texting and doing things normal people do. I don’t remember the grand finale. The other patients and I left the room with the promised vista of fireworks overlooking the Charles, wheeling their IV poles alongside us. I heard the muffled explosions from my sealed-off room, just a gentle murmur that was barely audible underneath the continuous hum of the air filtration system.
Every 4th of July I remember this. I remember that room on the 10th floor of Mass General’s cancer ward and the patients wheeling about IV poles, hoping to see a clear view of fireworks but, in the end, not really caring. Or maybe I cared in that way cancer patients care about things that, though they would be nice, weren’t of the highest priority at the moment. Or perhaps, like me, we all wanted to enjoy the goddamn fireworks while drinking some shitty beers and be normal, feel normal… whatever that was at the time. But alas, we all returned to our rooms to resume our treatment or our sleepless nights of nausea and delirium, or the darkness-induced existential terrors, fears, and tears, to everything (everything!) else that takes precedence over fireworks.
I don’t look back on it now, every summer, every 4th of July, and feel a sort of unease or anger, etc. I feel this reaction with other things, naturally. Other dates are inescapable; those, too, have lost their bite. The day after Mother’s Day 2017, I had a stroke, which paralyzed my left arm, postponed my transplant, and sent me to the hospital for brain surgery. I watched the solstice sun (image attached) lazily creep across the sky from my room at Mass General.
These are there and solidified in my personal journey and my personal history. They’re not so much pitfalls anymore in the yearly cycle, so much as pitstops that allow me to recess my place within all this and the growth within myself.
I have been compiling some comparison photos. The ones of me during treatment, which were taken during my inpatient stay at Mass General, were so hard to look at for the longest time. It is still unnerving. When I upload and then delete photos from my phone these photos, as well as a few of my family, are the ones that always remain.
In the last several months, I have only been able to pause, look at them, and consider who that person was and what aspects of him still remain. The shift in this ability, that of being able to witness this previous Jeremiah, came after my psychological and emotional hardship experienced while abroad in the fall ‘19. Since then, things have started to dissolve, things that have been carried and dragged too far for too long. Perhaps this is why I can look at this photo with more compassion and kindness. Yes, there is still fear, of course there will always be fear.
During these years of survivorship, some people have drifted out of my life, as any path to any destination worth arriving at isn’t free of bramble and vexation. Others have grown increasingly closer to me, and in sticking with the path analogy, our comradery has strengthened, allowing us to work together through the dense underbrush that is life.
I was asked recently what I thought life “was.” A friend, who is also in a place of stability post-treatment and now trying to navigate the “new normal”, posed the question. It was vague, rather broad, but I knew what she meant.
At the moment, I was working on a lesson plan for a course I’m taking and had Miles Davis’s “Bitches Brew” playing in the background. My knee-jerk response was that life is like jazz.
Bitches Brew sounds as though it’s just about to fall apart, as if it’s always teetering on the edge but somehow manages to hold itself together. I have been listening to it for years and each time I keep expecting it to implode, to crumble inward upon itself in a cacophony of absolute mayhem.
I want it to.
A part of me wants it to. I want to pinpoint the exact moment and exclaim, “See, right there, I told you!” I want it to because then I would feel like I could do the same; I could crumble inward after pushing too hard for too long.
But I don’t, nor does “Bitches Brew”. We both walk that tightrope. Onward. Each and every time I listen, I am awestruck. Not so much by the virtuosic skills of Davis and his co-conspirators that sparked a whole new genre of jazz, but by the fact that it doesn’t fall apart and keeps moving along as if in an act of defiance.
Life is like jazz; have a set idea, a plan to follow, and improvise in any situation that might differ from what was expected or wanted. Life is like jazz, play with band mates who can follow your lead – OR you theirs. Life is like jazz, pay homage to the greats, but add your own ideas; build off of them, respect them and the paths they’ve laid, yet explore what might be jumping off points for your journey. Life is like jazz, play a wrong note and recognize there is no such thing as a wrong note, just an experience had. Life is like jazz, as Davis said, “Anybody can play. The note is only 20 percent. The attitude of the motherfucker who plays it is 80 percent.”
Cancer is a sort of middle-ground between what was and will eventually be. This middle ground is unstable and forever shifting and changing — often daily. As unstable as it is, it also acts as an anchor. With a diagnosis and subsequent treatment, with life revolving around clinics and tests, trying to grapple with the “new normal” post-cancer, as well as the shift in perspective of life when the dust settles, patients seek refuge on this ground.
This middle ground, however, cannot hold, nor is it meant to.
To acknowledge that one is in remission is to become aware that the steps, however frightening, must be taken to move away from the middle ground to step forward. I have kept myself there in this gray area.
I can stay here forever. There is safety here. I’ll live here. I’ll build a life here.
This middle ground, however, cannot hold, nor is it meant to.
As horrifying as they were the circumstances in France rattled parts of me, they forced me to bear witness to the events that had taken place over the years. I was unprepared to handle the deluge of emotions from observing this. The events snapped me into such intense awareness of all that had come to pass, each and every brutal moment of my journey. The emotional scars became apparent. The physical scars radiated, and I could not look away from either or turn my attention elsewhere. My emotional being couldn’t hold out any longer; I was shedding layers, and the feeling of emotional nudity was unbearable. I was losing the self I had been constructing; who was Jeremiah now? This identity was slipping, try as I might I couldn’t hold it. Everything came to a grinding halt; I was literally and figuratively unable to take another step. Brain surgery had to occur during active treatment; there was no question about the procedure. When everything started to rise to the surface, when the layers were dropping away, the physical and psychological acknowledgment of this particular scar was the trigger that sent me into a tailspin.
I have been able to meditate on some of the imagery and hallucinations I experienced during my breakdown. There are some images that, until now, have remained mysterious or so tangled in metaphor that I couldn’t decipher them. One in particular was pulling a hair-like substance from my chest. This unnerved me, and I wasn’t ready to interpret it. I had been building an identity around cancer; it engulfed my entire life for so long that I took on that persona, that of a patient. ‘I have cancer’, I’d say to myself, or I speak about it as though it was current, that I still had it, that I was still in the place of treatment. Neither is true. This gesture of pulling this substance from my chest is so clear to me now, so obvious. I was trying to extract this identity, this version of myself that has since passed. The transient persona that I had outgrown yet was fiercely holding onto. From within me, from my core, I was trying to haul this out, to unburden myself of it. Not to rid myself of the memories, good or bad, nor the lessons learned, as there are numerous — a lifetime’s worth! I was trying to purge myself of all that didn’t serve me, holding me back from stepping off the crumbling middle ground.
I had to return to France; Golinhac was calling me. All this came about there; all that dormant within me rose fully to my attention — glaringly so! In return, I would leave the remanence of this deteriorating middle ground and my meticulously crafted persona. I’d keep the new awareness and lessons from the incidences experienced there and feel a sense of certainty in stepping away.
I put a ticket on my charge card and began packing. Just a few weeks after I left France, a complete emotional and psychological mess, I was going back.
Everyone expressed their concerns. They were worried that I was still very vulnerable and returning so soon, in a fragile emotional and psychological state, would be very unwise. Why, after such a short period of time, would I want to return to the site of my breakdown? To the place where, just a few weeks ago, I was admitted to the emergency room after being found screaming and howling in the middle of a footpath just outside of Golinhac. These questions started building in my mind, too. Why would I want to do this? The entire way to Boston, which on the bus felt like an eternity, I was wondering what on earth I was doing. What was I hoping for? I didn’t know the answer to anything. Even during my layover in Lisbon, I still wondered and questioned everything.
I admitted to a dear friend who has been an incredible support this entire time and someone I feel safe confiding in,
“I don’t know what I’m searching for.”
“I don’t either,” she replied.
This is the uncertainty that keeps a cancer survivor remaining in the middle ground. Not only the uncertainty of life, as explained, but that of oneself, the question of who one is — who is this Jeremiah? How has he arrived here?
I don’t need an identity here. I can stay here forever. There is safety here. I’ll live here. I’ll build a life here.
This middle ground, however, cannot hold, nor is it meant to.
I walked east out of Golinhac with ever-increasing anxiety. I had to stop and gather myself to go on a few times. At one point, I even considered returning home, admitting it was too soon for such an undertaking. But I was still drawn onward and slowed considerably, taking deep, slow breaths with each step. I stopped at a certain point, put down my pack, and started emulating the gesture of pulling the hair substance from my chest. Gently, slowly, without the frantic haste of my hallucination, I mimicked the action, one hand then the other in a rhythmic fashion as though softly pulling one long, continuous thread from my chest. The action became ritualized in its repetition, fluidity, and symbolism, bringing a deep sense of peace. I envisioned dismantling the persona that had been constructed around cancer, the identity that no longer served me. Bit by bit, as if pulling a single thread that unweaves a tapestry, I unraveled an identity. I simultaneously entwined a new Jeremiah, no longer the patient, yet holding the memories and lessons – the same thread yet a different weave pattern.
I stood still in the silence of the location and continued taking long, slow breaths. Dusk arrived, and with it, a chill. I retrieved my pack and walked westward back towards Golinhac.
The peace I felt there has remained. Returning to France, which consisted only of four full days, left me feeling as though I had undergone years of psychotherapy. It isn’t so much that I am thankful for the breakdown itself, as it was terrifying, rather, that I am thankful for that which it revealed to me and the metamorphic shifts that have since followed.
This is not to say that I have stepped entirely from the teetering middle ground, but I have one foot firmly planted on the other side.
I can build an identity here, one that is linked to (the) cancer via memories and life lessons and not one that is torn between two worlds, two worlds that ultimately hinder the desperately needed stability required for reconstruction.
Traveling does wonders for the mind and spirit. Each traveler has such a unique and individual experience; this is where the power of exploration lies.
It has always been a way for me to reflect. I can step back and observe my life from a different perspective. It has a meditative quality in that I, from that place of outside observer, can sit with choices made, actions taken, or even, more importantly, choices at hand. It may be because when traveling, I can just be. I can strip away the layers and titles and personas and simply be. In doing so, it is easier to stand back and look at one’s life, the past, and the present. Without the smothering layers of what one is, what & how one should be, etc., things become more straightforward.
My sweet and generous mother lumped my graduation, Christmas, and birthday gifts to allow me to travel a bit. She would say that my graduation gift would be a ticket somewhere- anywhere when all was said and done with my illness, and things stabilized enough. We both held onto the idea of future travel and that I would one day return to the carefree, vagabond lifestyle I once lived. Her gift allowed me to rekindle a sense of independence I was unsure I’d ever have again.
I felt so fortunate; this giddy, childlike joy rose in me. I have a thirst for traveling, and after three years of a life revolving almost entirely around medical appointments and clinics, my great thirst was finally quenched. Naturally, because of said health issues, panic, stress, anxiety, etc., were never too far behind. Mostly, these anxiety and stress issues revolve around my seizure activity. If a place is too busy or overwhelming, I become anxious and, in turn, stressed that the anxiety will trigger a seizure… It’s a bit of a downward spiral unless I catch it beforehand and keep calm. At times, the anxiety levels were rather acute, though certainly a small price to pay for the ability to travel once more.
However, there was also this other feeling, too. Something that had yet to present itself sent a different swell of fear and anxiety through my being. I felt a nervous tingling running alongside the feelings of glee and gratitude. It was an emotion thus far unfelt and one I could not label.
My favorite way to travel is walking. City walking is excellent, but I’m referring to setting out on foot and just… walking. Many of the paths I choose are well-worn footpaths that often pass through many small villages and cities that are well off the tourist itinerary. These, to me, are where the authentic culture lies.
During this trip, I set out from a small city in southern France along a footpath used by pilgrims walking to Santiago de Compostela in northwestern Spain. On other adventures, I have walked different parts of this same route; however, those were within Spain.
The term pilgrim might have been used once to denote a monk or other religious devotee trekking hundreds of grueling miles to reach a small shrine or holy site. The modern “”pilgrim,”” however, is trekking for several reasons and not solely those of spiritual devotion.
I initially went to Le Puy en Velay, a city in southern France, because I had heard about it in 2006 while traveling in Spain. A Frenchman told me, “You must go to my hometown, it is beautiful!” If anyone speaks highly of their hometown, I should visit. While there, I came across a symbol that has guided pilgrims for hundreds of years across various parts of Europe to a city in northwestern Spain. I used the same symbol, a scallop shell, that I followed instead during my many treks to the same destination. The saying “all roads lead to Rome” can easily be said about the numerous footpaths across Europe; all paths lead to Santiago de Compostela.
I believe in such events and other serendipitous occurrences in one’s life. So, with minimal hesitation, as usual with my travels, I packed my rucksack and started walking.
Walking is all about allowing the mind to enter that previously mentioned meditative state. The reflection, at least for me, begins with the rhythmic movement of the physical being. After this, the mind follows suit, and the pattern begins to move in a spiritual direction. It is also about passing through quaint little towns and cities, many of which still need to be jaded by the onslaught of tourists. This is really why I love it.
It is also very hard. I’m not talking about blisters and a sore back; I’m talking about the mental and emotional side effects that the simplicity of walking stirs up. In the past, this was precisely why I would walk. To me, it is a purge. After a long, challenging semester – walk! After a shitty breakup – walk!
However, this time, the difficulties were beyond those of a sore back, and blisters emerged. The darker emotions that ran alongside the glee and gratitude, that which had yet to present itself, the feelings that were thus unfelt … These are inescapable and were in my rucksack.
Somewhere, neither here nor there as these treks often go, those things crawled out of and stood before me, blocking the path, any forward movement, and hindering any advancement of mind and body. Literally, I was unable to take another step. I could feel everything within me shifting and pulsating like I had spent the last several miles ascending a peak. I wasn’t sure how to react or what to do. I began to think I had hit a wall. This would make sense, considering my deconditioned state from my years of relative inactivity. I removed the water bottle from my rucksack’s side holder and had a long drink. After that, I removed my hat to run fresh water over my head, thinking this might revive me and allow me to set out again. As I did so, my fingers ran over the scar, the wrinkled creases and little divots where my brain had been operated on. I paused, then I began howling and screaming, “”I had fucking brain surgery! I had fucking brain surgery!””
I cracked. I broke down. Right there, between somewhere and nowhere in southern France, I broke along an ancient footpath upon which I had spent the entire day briskly walking. I crumbled slightly and then came crashing down! That which hadn’t presented itself stepped forth, looming over me.
The weight of three years fell upon me; fear, pain, both emotional and physical, anger, and despair…
The weight of spitting into the sink and seeing blood.
The weight of the first seizure in Chicago and subsequent diagnosis.
The weight of my MFA studies was disrupted just weeks before graduation.
The weight of endless nights full of fears, of waking from nightmares, of waking up both enraged and saddened simultaneously,
The weight of looking at myself, at my reflection in the mirror, when I was bald and bloated, a gray form with sunken eyes stood there looking back. A figure trying to come to terms with life, trying to put the pieces together in hopes of making sense of everything.
The weight of my girlfriend at the time looking at me with loving and compassionate eyes, but also fear and longing for us to begin something that we had barely just started.
The weight of being told that the cancer had returned only six months after initial treatment, six months after my life was gaining stability.
The weight of postponing a course I was set to teach only days from the news of my recurrence.
The weight of a stroke and the brain surgery that followed.
The weight of an entire summer spent in a hospital room, cut off from the world, spending each day and night in a chemo-induced nightmare, praying I’d make it through two back-to-back transplants.
The weight of the seizures returned shortly after my transplant, rendering me a fear-filled recluse, scared of walking down the street without being full of Ativan.
Right then and there, I fell apart in every way imaginable.
I cried. I cried so hard and wailed so much that my throat hurt. I don’t know how long I cried. I heard myself screaming, but it didn’t sound like me; it was deep and guttural, animal-like and completely unnatural. I don’t know how long I have remained in this state. I was shaking, both from the fast-approaching night and also from the overwhelming emotional release from crying so much.
After that, I must’ve been in a state of delirium because things were hazy and did not add up; time seemed distorted. I’m sure many gaps will be filled with memories over the coming months. I remember an older French couple, Louise and Clément, who must have found me while trekking. I remember Louise was giving me tea and cookies, but I couldn’t hold either down, so I kept getting sick. We had reached one of the many hostels along the route. They had wrapped me in a blanket and dressed me in a thicker woolen shirt. Eventually, I was able to sip tea slowly. It began to warm me, but I couldn’t manage the cookies yet. I just kept hugging Louise and crying. She must have known I spoke sufficient French to maintain a dialogue and told me they had found me only a short distance from the hostel. I was kneeling on all fours, pack still on, in the middle of the path, crying and screaming. Her hand movements and gestures showed me that it was more than just crying.
The tea was warming my body, and my head became more apparent. Things started to make a bit more sense. I remember the invasion of emotions and thoughts and how it felt as if they were choking me; I remember physically gagging.
I remember having this desire to tear open my own body, to open up my chest cavity and remove something, to get it out– to pull out every last bit, piece by piece of it; I envisioned strands of hair-like substance. Though what it was exactly, I didn’t know.
Perhaps it was due to my crying, but it seemed I had reached a sort of hallucinatory state where strange and nightmarish events were happening. I felt like I was falling but never reached the ground; it was this continuous feeling of vertigo and the constant fear and uncertainty of when or if I would make contact with the ground. In another Hallucination, I could barely move my legs, but they were stuck, being held back by something. These hallucinations were broken up by my sobbing as if my crying was holding them back.
I was lost in a terrifying daydream,-state recalling all these events when Clément Sat down beside me and said, in English, “”We go now to the hospital.””
They put me in the backseat of a car, to whom it belonged I did not know, and then they covered me with blankets. I drifted in and out of sleep, only waking now and then to hear them speaking softly. The warmth of the blankets and the sound of French, which I always found soothing, pushed and pulled me from consciousness.
My sleep was tormented by nightmares; however, again, they were filled with strange hallucinations of being in a room where my thoughts were echoing, reverberating within the space. I was not speaking aloud, but I could hear my stream-of-consciousness- thoughts within the room.
Again, I had this desire to break open my chest and pull forth some substance. This was the strangest of all my hallucinations. I could feel my hands both upon my chest and moving within it. I don’t know what I was seeking or hoping to find therein; I just knew I was looking with a frantic desperation for something.
I deduced later that The Louise and Clément found me just outside Golinhac. So it would make sense for us to go to a hospital called Rodez. At the time, however, I didn’t know where I was.
They sat with me in the emergency department until I was admitted. I kept holding Louise’s hand. Now and then, she would give mine a gentle squeeze so I would know she was there.
Nurses drew several vials of blood, and the doctor ordered an MRI. Several doctors came in, shook all of our hands, and then proceeded to ask various questions. Louise held my hand throughout it all and gently squeezed it now and then.
The Psychiatrist introduced herself as formally as everyone else had. We spoke at length about all that had happened, the feelings and thoughts, my health history, life, and family dynamics – it seems the questions were endless.
At this point, I was close to tears and had already broken down several times during the conversation.
Evidently, I didn’t pose a threat to myself or others, so they allowed me to stay in the room I was in. After she left, I heard her speak with Louise and Clément Just outside the door. When they came in, they said they would be back in the morning and hoped I would be able to rest. Clément had family in Rodez, so they wouldn’t be far if I needed anything.
The following day, one of the doctors entered the room. He said the MRI was okay, which I knew as I had one recently in conjunction with my CT scan for routine cancer screening. The bloodwork was also regular. I knew this as well, but I also knew they were screening for illicit drugs. That didn’t surprise me, considering the state I was in upon arrival. Even though many things were becoming apparent, I wasn’t entirely sure what state I was in or how I acted when I arrived the night before. How was I acting? How did I look upon arrival — how did we look upon arrival? This older French couple brings a foreigner into the emergency room at night. A foreigner who was sobbing and describing surreal, nightmarish-like events. A bleary-eyed foreigner undoubtedly speaking a mixture of gibberish, French, and English… It only makes sense that they would order toxicology screening.
I drifted in and out of sleep. Louise and Clément arrived and looked tired; nonetheless, their eyes showed compassion.
Louise Brought in cups upon cups of tea. I don’t know if she really enjoyed tea or if she was still concerned that I needed to be warm.
The Psychiatrist arrived sometime later and, as formally as ever, as though she were just meeting us, said good morning and shook our hands. She asked how I felt and nodded understandingly when I mentioned how tired I was. She spoke at length about her theories regarding the night before and the state I was in upon arrival. Much of it was lost on me as my head was still fuzzy from the previous night’s events and the tiredness that seemed to intensify. She described it as a nervous breakdown, a dépression nerveuse. She studied me as though looking for an understanding of her words. I just nodded. I tend to do this; I just nod when the subject of my health, mental or physical, arises. She nodded as well, and this became the language we shared.
With that, she began asking logistical questions about my stay in France. When I told her I was leaving Geneva on October 23, she looked relieved but a little concerned. Then, she proceeded to ask several questions regarding my travel plans. It was evident her feelings were mixed both about my upcoming travels as well as the fragility of my mental health. She kept her gaze fixed upon me. I remember looking away several times only to look back to find her still staring at me with such intensity. This unnerved me. However, each time my eyes met hers, it seemed as if she was trying to understand something; it was a questioning look more than anything. There is so much haziness around my stay in the emergency department, but I am sure about the depth of her attention on me.
Louise and Clément lived in Lyon and invited me to stay with them until my departure. They were also comforted to hear I would be leaving from Geneva instead of Paris or some other airport requiring a lengthy journey.
Breaking her formal manner, the Psychiatrist placed her hand upon mine, resting in my lap, and said, “It is no wonder this has happened; I am surprised it is just occurring now.” Perhaps that is why she held her gaze upon me with such unwavering intensity; maybe she was trying to find any words that would help explain all of this to me.
Oddly enough, this seemingly simple comment made me feel better. It validated something inside of me. Though unclear, it began dragging things out into the light. Not everything, of course. Events and emotions will present themselves over time, but they will do so nonetheless. They will do so about this particular incident, the illness, and the life I have constructed around it. The wall had been breached, and this breakdown was the catalyst… it only took a horrific experience and the guidance of two strangers who bravely stood by, never once questioning my emotional or psychological state. Two guardians who seemed to understand the screaming, sobbing, and guttural language I was speaking. Two caretakers who continuously brought me an insane amount of tea!
Her comment let me touch down; the continuous fall, the constant vertigo, began to end. The multiple voices within the room – my own unspoken voices — began to speak clearly, presenting as one solitary voice with which I would one day learn to communicate. My legs, incapable of moving, those being held back, shifted slightly – ever so slightly – a barely perceivable amount. The unknown thing I desperately wanted to rip from my chest… this will take more time to understand and come to terms with. I’m okay with that. I’m patient, and I am certainly not going anywhere.
She was tagging them, defining them, placing a label on them.
When we label something, we are forced to recognize it. It is no longer something, but rather, in this particular context of the psychiatrist’spsychiatrist’s comment, a matter of permission. I am permitting this to happen. I am allowing this to take place. I am relinquishing control. I am letting go.
I’ve always perceived letting go as a weakness, the antithesis, of course, being a strength. I would stubbornly hold on; I would not be weak and fight to the bitter end to prove it!
My stubbornness led me to the emergency room in Rodez, France.
She could have quickly said, ”It is no wonder this is happening; I am surprised you’re permitting it to do so now.”
I want labels. I want to define things to recognize, grow, and heal from them. At least then, when I fight to whichever end comes for me, I’ll know what I was fighting for.
My return… How would I make the journey back to the States? Who would I turn to for help and comfort? Who would watch and allow me to open as Louise and Clément had? Now, just two days until my return flight was set to depart, with the recent events still very present and raw in my mind and soul, I felt frozen with fear. I felt alone. I felt alone in so many ways. In the presence of Louise and Clément, I felt safe and comforted knowing, not only that they were there with me at present to protect me but that they had seen me in the state in which they had found me just a few nights before.
I wrote to my older who, thanks to the gods, was also in Europe at the time. She had seen me in tears many times throughout my journey with illness; she had never seen me in my current state. Though the dépression nerveuse allowed the wall to be breached, I was presented with yet another wall. Advancement is happening, but the process is slow.
Within 12 hours, she was in Geneva. She had changed our tickets and arranged everything to ensure our journeys home would be the same. I would have needed help to make the trip. I held her hand the entire way, from Geneva to Heathrow and onward to Boston.
This is a form of letting go. This is relinquishing control. Another part of the wall, or perhaps a wall in and of itself, permits others to offer assistance. I am stubborn; as mentioned, it is hard for me to accept this. I have always relied on myself to manage various situations in life as I find others to fall short when called upon. Louise and Clément showed me that self-reliance isn’t always possible; sometimes, help must be accepted. They showed me that help and care come from a place of unconditional love, too.
Just as Louise held my hand throughout the dark night, gently squeezing it now and then so I would feel her presence, so too did my older sister when she guided me home.
I had this thought today. I was gathering my things and packing up my belongings before setting out to do a bit of hiking.
I glanced up at the wall to check the time, and before I commenced packing, I noticed this beautiful ray of sunlight, elongated, stretching from one point to another, almost crossing the entire length of the wall.
Hastily, I resumed packing, letting the moment of awareness slip by, as is their nature.
After what I thought was just a few minutes, I glanced again at the clock. I was once again blissfully ensnared within the moment when I noticed that the thin strip of light had shifted entirely and was just a fraction of what it once was; not only had it diminished, but it was almost entirely gone.
Such is life; fast-moving with little blips of delicious awareness.
healing is a circular path 