Trigger warning: This post deals with issues such as depression and mental/emotional breakdown.
The word “met” refers to metastatic cancer.
The elation I felt after these recent scans was overwhelming! When my oncologist said that we would move the scans to every 6 months, as opposed to the quarterly schedule we had maintained since my stem cell transplant, I cried. When I have broken down in front of him before, which I have done on numerous occasions, it was due to negative news or concerns he had. This time, however, the tears resulted from pure joy and happiness!
I was shocked when he told me this, completely speechless. When he entered his office, I braced myself. The 2nd to last scans performed in August revealed “nonspecific nodular change” on the largest pulmonary mets. Though things were “stable” then, it was still cause for worry.
This is the area where the recurrence was detected in early 2017, so naturally, it was worrisome.
I didn’t tell anyone. Not a soul. I said things were stable, but I didn’t mention the change.
We would “keep an eye on it”; that was the plan. We’d see how things looked in three months and how they appeared after the following scans. These were the parting words after my appointment in August – we’ll just wait and see.
Three months! For three months, I wondered what might be occurring within my lungs.
Those who talk about “being present”, living in the “now”, etc. are full of shit. When you’re told that there is a slight change in size in one of the mets on your lungs and that it might be growing, but we’re not sure, so let’s wait three months to be specific, you’d be leaping into the future and entertaining every possibility imaginable. Anyone would be anywhere BUT “here and now”; their minds would be bedeviled by worry and fear. Even Siddhārtha Gautama would be shitting himself.
Several months ago, an MRI revealed that there was potential growth in the met in my brain, the one that was treated with radiation therapy in 2016. It turned out that it was just swelling and that there wasn’t any growth. My mind kept reminding me of this incident and that perhaps the supposed growth in one of the lung nodules was also the result of swelling…
I was informed of this “nodular change” on September 16th, the day before I departed on what I had hoped would be a nice trip abroad for my birthday. The tickets had been purchased well in advance, and I was going regardless of the news I had just received.
I thought taking a short vacation would be nice. After hearing the news about the nodule change, I felt a sort of urgency to leave – in fact, I wanted to run away and be as far away from everything as possible.
While abroad, I began to “live it up”: lavish AirBnBs & private hotel rooms, extravagant meals at swanky restaurants, fancy new attire for my nights out, etc. My mentality, as morbid as it might sound, was, ‘fuck-it, if this is my last go-‘round, I’m sure as hell gonna enjoy myself!’
I prolonged my stay. I didn’t want to be home; I didn’t want time to sit and think about the possibilities and entertain the what-ifs that have plagued my thoughts since my initial diagnosis.
Naturally, all the fancy hotels and fine dining couldn’t keep the torrent of thoughts and worries at bay. They were creeping in. I was losing sleep, and, as a result, my already fragile psychological and emotional state began to further weaken. I didn’t recognize who I was becoming; I started lashing out at people, hurling accusations at friends, displacing the intense feelings of anger and sadness. I couldn’t bear the thought of a recurrence, of further treatment, and was spiraling out of control from the fear and stress I was experiencing. On top of that, amid this storm sweeping me away, I couldn’t find the words; nothing made sense, and I felt alone.
I just wanted to be held. This desire kept returning to me. This need and wish to be wrapped up and held securely was almost childlike. I didn’t want to dump the emotional weight of my situation onto anyone… I just wanted the comfort of prolonged embraces.
The stress and fear was too much. It ended with a hospitalization in Rodez, France. I experienced a nervous breakdown. After 5 weeks of traveling and doing my utmost to push away the anger, fear, and sadness that had sprouted from recent test results, I fell apart. Touching the scar from my craniotomy set into motion an avalanche of emotions, the likes of which I was entirely unprepared to manage.
My mother was the first person I told. I only spoke about it because the report from the most recent CT results mentioned the stability of all pulmonary nodules, including the one that presented with nonspecific changes 3 months prior. This would have been noted in the findings if it had been grown.
She didn’t understand why I didn’t tell anyone. “It’s too much stress for you, “she said, “you shouldn’t have been alone in this!”
I was alone with this knowledge and knew that a change had been detected in the August scans. I didn’t want to say anything because I didn’t know how. I am not good with communication; I have repeatedly repeated this. It isn’t that I’m not opening up, as some have told me; I just find spoken words strange and cumbersome. They don’t align themselves with my thoughts or emotions. Throughout my entire journey with cancer, I have felt at a loss for words. Even in writing updates and maintaining my blog, I have thought that the words I choose are so close to expressing what I need… but fall short every time. They lack the substance required for specific emotional experiences and psychological states. Before diagnosis, I could easily find the words needed to articulate my feelings and express myself. After being discharged from the hospital in Chicago, after being told I had cancer and that my life had been drastically altered, I immediately discovered that words no longer added up. Initially, I thought it was due to several things: stress, fear, seizures, seizure meds, and sleep deprivation. I considered these while packing my belongings and preparing for my return home for treatment. I was tossing clothes in bags and ditching possessions, all the while I was trying to understand why I couldn’t connect my thoughts and emotions with the words I so greatly desired. This ineptitude has continued and hasn’t diminished with time.
The knowledge that everything is stable has brought an immense feeling of peace that has evaded me for far too long. The serenity that has arrived has lessened the pressure I have been putting on myself in many aspects of my life. I want nothing more than to find the words needed to feel a sort of connection with others. Perhaps one day, they’ll arrive when the dust from all this has finally settled. This is the area where I live in the “here and now,” where I am fully present. I’ll be with it daily, moment to moment, and I hope the words will eventually harmonize with my thoughts and emotions.
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.
I have found that, over the years, I have become more and more incapable of fully expressing myself with words. I fancy myself a bit of a wordsmith; however, when I re-read some of my writings, as proud as I am of them as individual pieces, I find that they lack something — some core piece I have yet to extract. When looking back at my regard my emotional and nervous breakdown, the one regarding my time in France and the subsequent “breakdown,” I wonder if that which I was trying to pull from my chest, the substance that was within me, was not a metaphor for trying endlessly to put words to my feelings and emotions. in many ways this makes sense; i didn’t understand what it was then, but i am starting to consider this. Since this occurrence, I have been presented with dreams, little fragments of this particular image. I am standing, open-mouthed, releasing only air while pulling the stringy substance from my chest.
i have relied on art throughout the years — in fact for the majority of my life i have done so. i distinctly remember one pottery class i took when i was 7 or 8 years old. We crafted simple coil pots, glazed them, and, at the next class, looked at our finished works fresh from the kiln. When I was glazing mine, I spent most of my time on the inside of the piece. I remember not paying attention to the work as a whole but working with a sort of feverish intensity on the inside. i have such a vivid memory of painting and painting, glazing and glazing the inner walls of the coil pot. i wanted the walls and, even more o the bottom, to be, upon firing, smooth, glass-like. I recall the bottom of the pot had accumulated so much glaze that a tiny puddle formed.
Of course, I look back now and place all these ideas and theories on why I was doing so, what I was trying to convey, etc. A part of me can’t help but look into this, to study this, not the actual piece; god knows it was that of a child but at my intention. Now, after 6 years of formal art training, most of which consisted of getting my ass kicked when my work was being torn apart during critique sessions, I certainly can’t help myself. The beauty of children, in terms of expressing and creating, is that they don’t drag so much theory and conceptual nonsense into it; a drawing of a dog is just that, a drawing of a dog. A coil pot with a puddle of glaze at the bottom is just that… a coil pot with a puddle of glaze at the bottom.
i wanted the inside to look good. I remember thinking this. There is no theory or conceptual bullshit attached; this is what I remember wanting to do; I was curious about how it would look post-firing. I was also interested in how it might look to others; a coil pot with a bottom rich in color (I chose a deep blue) and as smooth as glass.
Most of the time, I fumble for words. My sister and I have a back-and-forth about this; she wants me to talk, open up, and express what I need now and how said needs can be met. i am left frustrated, trying to manage these emotions upon which i can’t place a label — even though i so desperately want to! Even with my psychologist, with whom I’ve been working weekly since diagnosis, I find myself lacking the appropriate words. Often, we will spend many sessions working through emotion or thought, and then, after a laborious undertaking, we find the words needed… or, rather, some of the words needed.
More often than not, I speak too quickly. Not necessarily in terms of speed, though i did struggle with a stammer as a child as my brain was moving too fast and i couldn’t formulate the words to match the momentum. But I speak without forethought. i fire off a thought without considering how it will be taken or interpreted. This has fucked up more relationships … I cringe now at some of the things I’ve inadvertently said. They weren’t meant to be harsh or cruel, as this is never my intention; they were just unfiltered, unrefined, unpolished, rough-around-the-edges, etc., etc., in an attempt to understand someone or probe a bit to gather more information, I’ll muddle things up to the point of no repair. Equally, I hope to find the appropriate words to express my thoughts or feelings. It’s as if I’m casting a line and doing so in real-time, hoping I’ll reel something closely resembling my current state of mind, my emotions. This, too, can end poorly; going along and sharing, prattling on, seeking words on the fly … …
Then, boom!… the realization of my faux pas is crystal clear.
In my opinion, this is getting worse. i asked my neurologist about various aspects of this in terms of toxicity (multiple chemo agents specifically designed to penetrate the blood/brain barrier) and other physiological damages to the actual brain tissue itself, such as scar tissue, narcotic tissue, etc., not to mention all the psychological shifts that undoubtedly impair various parts of my overall being. His response was reassuring but slightly disheartening. “it’s no wonder you’re functioning as well as you are, jeremiah.”
These psychological (and emotional!) shifts are events, especially considering the recent experience in France and the “breakdown” I experienced there.
After the recent experiences in France, as well as all these experiences as a whole, i am left with so many emotions, almost all of which i can’t articulate. i am left with pain and other emotions i can’t share because i simply don’t have the words! I hope these portraits might, in some small way, express all that I so desperately want to share. They are already revealing so much to me; things are emerging bit by bit, line by line.
For the majority of my life, I have relied on art in one way or another. Now, more than ever, I am turning to it not only as a place of refuge during these times but to aid in my understanding of self and expressing and communicating that which is just under the surface and in need of release.
That which is already being revealed to me through my work, these ink drawings, through these portraits, are little steps toward further healing.
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.
Two years ago, I returned from Mass General Hospital (MGH). My second stem cell transplant had wrecked me; it was brutal. “You really trooped through these!” said my oncologist. Though proud to hear such words, I was out of my mind and ready to be home. I spent the last 3 months in a small, sterile, seal-off hospital room, removed from the world (save for nurses and doctors), removed from fresh air, from direct sunlight… I just wanted to go home!
Initially, I met my oncologist at MGH every week. He was keeping a very close eye on me. Then we met every 2 weeks, every month, every 3 months… I have returned to the care of my oncologist here, in Maine, we currently meet every 6 months.
During this time, I was having scans (CT of my chest, abdomen, and pelvis and an MRI of my brain) every three months. Naturally, having experienced a recurrence just 6 months after the original/initial treatment, every set of scans sends me into a downward spiral of fear, anxiety, anger, etc.
Even now, having bumped my scans out to every 6 months, I am still sent into a tailspin when the time draws near for scans/tests. It’s the same with each round; fear, anxiety, anger. This is common, at least I’m assuming it is, for every cancer patient.
Today, however, two years out from my stem cell transplant, I learned that my CT scans (chest, abdomen, pelvis) are still showing signs of stability! The peace that has set in with this knowledge is immeasurable!
Over a decade ago, when life seemed easier in many ways, partly due to blissful naivety, I left Paris en route to Munich. There, I met with German buddies to make our way on another adventure around the British Isles. Though I had been there a few times prior, I hadn’t traveled by car, and I knew this would add a whole new dimension to our journey. The British Isles, namely Scotland, are my ancestors’ land(s). I was keen on getting off the beaten track, so to speak, and really explore.
The year prior, or perhaps two years prior, we met up in Zurich, where I studied then, and set out to explore Italy. Both journeys were full of spontaneity and, naturally, considering our ages, delicious German beers. Heavy drinking aside, each journey graced us with limitless possibilities. Cliche, perhaps, but we each grew throughout our adventures. Of course, this is only in hindsight, as always, and one looks back on such voyages with a sigh and a smile, retracing not only the steps that we took then but the steps that lead each of us to our current places here and now.
There were many laughs along the way, which weren’t due to the beer; in some two or three cases, it took up more space than our luggage. We encountered some caravan-dwelling folks in Calais who seemed to live in a clown car of sorts, as each time we turned around, there was another… and another… and another. Each one disembarked until their numbers were excellent, and we soon realized that their intentions were not as friendly as we had assumed… blessed naivety. When we needed, which was often, we slept on beaches when the weather was “nice,” an” hud” led under the car, an old Mercedes (which is probably still going vital to this day) when the weather took a fowl turn. One of their friends, studying at Oxford, invited us to stay in his dorm room, which made up for the nights sleeping under the car. We cooked white rice over a camp stove and added ketchup to flavor it… a delectable meal, even if the rice was crunchy. We crossed over the Irish Sea on a late-night ferry from Holyhead. The ferry seemed almost empty at this godforsaken hour, and we sprawled out in the passenger lounge on hard plastic seats to catch a little rest. Rest evaded me as the rocking of the ferry made me queasy.
Somewhere well south of Dublin, we were driving along a double-lane highway which, seemingly instantaneously, turned into a sort of country lane just wide enough for two cars to pass. From there, it tapered off into a single lane, then a dirt road, and then a path that, I presume, was made for a tractor or other such piece of equipment. I am not sure if it ended together in pure Irish countryside or not… Had the roadmap been used more regularly, it would have consisted of major roadways, highways, etc. Still, this little dirt track wasn’t wasn’t make matters more interesting; our dual language road map was perfect for a German- or English-speaking traveler wishing to stay on the main autoroutes. Still, it was not helpful in our current situation. All the signs we could see, some just propped up on rock walls, others, which seemed to point in a random direction and undoubtedly acted more as weathervanes, swiveling this way and that even in the gentlest of breezes, were in Irish (Gaelic).
In the middle of seemingly nowhere, we came upon a small cottage. It was an idyllic, postcard-worthy scene. After a brief discussion, it was decided that, since English was my native tongue, I would speak with whoever was there — if anyone at all. After knocking on the door, I paused momentarily to admire the houses. I also wondered how one might live here in what seemed to be the middle of nowhere. When I was about to leave, the door opened, and an older woman greeted me. I can’t imagine how I looked, considering we had been sleeping under a car and consuming white rice with ketchup-washed-down beer for the better part of 2 weeks. But she didn’t seem to notice or care. I presume she had been watching from a window, studying the car with German plates and the three bedraggled boys.
“Good afternoon,” I said, “I’m sorry to bother you, but we’re lost.”
She smiled warmly.
It wasn’t until later that I began considering my comment and her potential interpretation. Here we were in what I called the “middle of nowhere”, but to”her it was home.
Lost Past and past participle of loss. Adjective: lost Denoting something that has been taken away or cannot be recovered, e.g., a lost opportunity.
It isn’t that this opportunity is lost forever; it is simply that such tidbits of wisdom only arrive when one is ready to receive them. The opportunity will repeat itself in various ways and forms until the knowledge is seen and accepted.
This journey of illness and recovery is an opportunity, right? Occasionally, I get glimpses of this, and a blissful warmth runs over me. Then I slip backward and become bitter at seeing something that has caused so much pain and suffering as a chance to learn and grow. Couldn’t I have learned this differently?
I awoke to a text from a dear friend of mine. She has been a source of endless support, care, and love during these years of both illness and recovery. She spoke about the destination and used the analogy of building a stone path and how I’m looking far ahead to some distant point. In turn, the stones I’m laying down to build the path are being overlooked in my haste, in my desire to arrive at some terminus just out of my reach. The task is daunting, too. Building a path that stretches for miles and miles leaves me angry and thus depleted. I realized the stone path I had been laying could barely be considered a path. It’s a twisting and winding mess leading here and there, running wildly in every direction, chasing every possibility, seeking out any and every venue in hopes that one thing, that anything, will relieve me, nourish me, heal me…
I have been wondering about this notion of being lost, of being somewhere neither here nor there and struggling desperately to find the way — any way, for that matter. How might it be if, by chance, I stopped desperately trying to find a way? Or, rather, as it seems, I’m after one in particular. What if I stopped giving a damn about the stone path all together? What if I stopped giving a damn about direction? If I just sat here, then what? To me, the construction of a path is a sign of strength and courage, forging boldly ahead in the face of it all. Even if I see the path as rambling madness running off in every which way, I still view it as such. What if I ceased the exhausting construction of this path? What if I just let it be? What if I just was?
Osho, an Indian spiritual guru and philosopher, said, “Be — don’t try to become.” I have spent far too much becoming. Becoming healthy. Becoming happy after such turmoil. Becoming whole again. Becoming. Becoming. Becoming. All of these are so close, just out of reach — just there.
If I become this, then I’ll have that. What a very strange equation.
This is the opportunity, the tidbit of wisdom that has arrived. Perhaps it has come a few times, and I simply wasn’t ready to be open to receiving it.
The warm smile from the older lady in Ireland was reassuring and comforting. Now, after so many years and countless experiences, I wonder if she was smiling because she knew I wasn’t lost then and that, in actuality, there is no such thing as being lost at all.
My first anti-convulsant med helped keep me seizure-free for over a year. As the seizures started, it was slowly increased in dosage to no avail. My neurologist changed that medication out for another, which has seemingly stopped working, too. Each medication has reduced the frequency of my seizures; however, I have experienced two severe episodes in the last few months. Each time, I tumbled pretty hard. The second time, I fell several steps and eventually went to the ER, wondering if I had a cracked rib. Thankfully, neither incident caused much harm. The wound, however, is more emotional and psychological. Yes, my entire torso might have been covered in bruises, but the real damage is in my psychological state. I want to move forward, and it seems the only real thing preventing doing just that is the seizure activity. I can manage the anxiety, kind of. The fatigue requires a good midday nap. The seizures are detrimental. My neurologist suggested that I enter an epilepsy monitoring unit (EMU) to understand the brain activity further and see if we might find a way to manage the seizures. He had mentioned this in the past, too. Initially, the thought of being inpatient (yet again!) in a neuroscience ward where I would not only be monitored 24/7 by a team of doctors and techs trying to induce seizures sounded horrific and barbaric. However, with the increase in activity, it seems the best option is to undergo monitoring to comprehend the root cause of the brain activity. Perhaps this will entail surgery or some other form of intervention. Right now, that is very much a mystery. The only thing that is understood is that this is hurting my emotional healing and recovery.
For years, I didn’t like my body. For the majority of my life, there was this sense of guilt or shame about how I looked and felt. As a result or product of, I am not sure, there was an internal struggle, a sort of emotional and spiritual dissonance within that which I can only refer to as the soul.
The body and soul were awkward, each attempting to adjust to one another, the physical and metaphysical working their way into a partnership of sorts. In one’s formative years, this is a time of great physical and emotional/spiritual strife. From my childhood until recently, this lingering sensation of turmoil always seemed to be.
Much of this stems from the labels and ideas thrust upon us by the society and culture into which we are born. It is hard to adjust and figure out our way through the swamp of ideals and morals, beliefs and philosophies that aren’t necessarily our own – in fact, they seldom are, as we soon discover, they are simply handed down piece by piece. In such a way, they become like the game a telephone might play as a child. One person starts a phrase, and it is passed around or down a line. The end product is usually some bastardized version of the initial statement. The awkwardness of soul and body, this feeling of discontent, eventually brings us to the point of either acceptance of the societal and cultural default settings or forces us to step out in hopes of discovering that to which we are drawn by some force and/or inner seeking. Both take courage, neither one can be deemed good or bad, right or wrong etc. Amid treatment, during the first rounds immediately following my diagnosis, I stepped out of the shower one morning and stood before the mirror fixed to the opposite wall. There, in front of me, was my naked body. My hair had long since fallen out on my head and my entire physical being. I looked like some prepubescent boy with the face of a middle-aged man – a face exponentially haggard by exhaustion, stress, anxiety, etc. My eyes were sunken, tired, and sad. They, my eyes, have always held every bit of my worry, fear, joy, passion, etc. I looked at myself; I stared at the body before me. I stood still and let the feelings and sensations (some of which I haven’t found a suitable word for) pulsate from my core.
It was the first time in my entire that I felt a sort of love, admiration, and acceptance for myself – for both my body and There was an incredible level of sadness and anger, and there still is – of course. Only a fool will tell you that love ousts hate or that bravery trumps cowardice. One cannot exist without the other, and their equality and power are matched 1:1. Ultimately, about all personal decisions.
I stood there. My fingers traced various lines and ran over my bloated body, puffy from steroids and other drugs administered during active treatment.
The orchiectomy incision looked back at me. I hadn’t looked at it since the operation and commencement of treatment. There was a part of me that didn’t want to look at it, to admit that it existed, or to deny the fact the surgery had taken place.
Afterward, I let my fingers wander over my body, from the top of my bald head to the sunken sockets holding my eyes, over my flabby belly, and along the scar that marks the right side of my groin. I let my arms fall to my sides. I remember distinctly looking at myself – really looking at myself. I never wanted to. The body, my body, was just something. Embarrassed as I am to say this, I viewed it as some form that I had been plagued by.
Beyond the fleshy, bloated being is where my gaze eventually fell, where it entered. How could it not? That is where all the lines I traced on my body were leading. As with the physical body, I didn’t think I was ready to honestly look or hold myself in that manner. But given the circumstances, the nand tire situation I was in, how could I not?
I have always been curious about the soul. The notion of it as a thing, for lack of a better word, fascinates me. I see it as something continuous, an ongoing form of energy, something that doesn’t end when the physical body holding it passes. The idea of the soul as something “eternal” stems from my catholic upbringing. As with my physical body and the shame and embarrassment I felt towards/about it, I felt something similar towards my soul. My physical body might lead to sin – to enjoyment and lust. My soul was a mere breath or thought away from damnation. Damned might I be should I enjoy my own flesh, my body – the sacred house of my soul! Damned might I be should I steer my soul on a course of my own choosing to embrace the free will I was taught so much about.
It took me nearly 3 decades to look at myself and appreciate the strength of my body and soul. It took almost 3 decades to look at myself, to behold myself, body and soul, and to give thanks.
Despite the anger and bitterness, and sadness, gratitude exists. Though I might struggle daily with my mental and emotional well-being, I’d be genuinely damned without appreciation.
The photo is a still from a performance video I made in 2012. Through my visual art I was always trying to articulate my feelings and beliefs about the physical and metaphysical. Through art I sought to examine this relationship and express that visually which alluded me in every other form of expression and means of communicating. In this video we have two beings; one that remains still, eyes closed. The other worked furiously to wrap and eventually unwrap their head with string. The being with their eyes closed is actually the one seeing, the one that is fully aware of what is going on internally and externally. The other being, the one wrapping their head with the string, is the being trying to figure out their place within everything, to literally untangle the mess and confusion in which they find themselves.
healing is a circular path 