Every year, on the 1st of April, I mention that this is the anniversary of my diagnosis. I talk about the irony of it, being that I was diagnosed on April Fool’s Day. (If you can’t see the incongruous nature of that situation, I’m not sure you’ll make it through life unscathed, my dear.) Today, however, I was thinking about other things, things beyond the absurdity of it all, which, to my pleasant surprise, brought about a giggle or two and not “what the fuck?” moments. You see, life is linear, in a roundabout way. Are you with me? I’ll try not to lose either of us, as I clarify.
We can wake up and go to bed and, in between, either exist or live. I was thinking about this as I stood on a small chunk of land poking out into the Bay of Biscay. Far out, somewhere, a storm was rolling and lurching – as they do. I arrived on foot, having walked from Santander. I knew a storm would come; storms always come; they’re linear – in a roundabout way. I didn’t consider the lightning storm. I was not expecting the hail nor the rapid drop in temperature after that. I thought that I had planned for things… We’re always looking, plotting, and considering ways to plan things. Yes, we’re always planning how to prepare. Things. Things. The linearity, the trajectory. Things. I wanted something to go accordingly. I wanted to exist, plan for hail, and prepare for post-graduate life. Things. Bring my gloves for the drop in temperature, and consider how to outline my resume to make a potential employer go, “He’s our guy!”
Existing. It’s existing.
To exist –
verb (used without object)
to have actual being; be:
The world exists, whether you like it or not.
This isn’t a survival story. Nope. I was freezing to death; I wasn’t lost in the depths of the wilderness. This is about sitting under a tree, stuffing my hands into my armpits to keep them warm while watching a storm pass over a gorgeous seascape. I was existing. I was waiting for linearity to run its course. Yep, I’m just sitting there and waiting it out. Linear. Point A – point B
Cancer and cancer survivorship is not linear. You can stuff your pack with all the shit you can think of, and something will come up, and what was once progression is kicked back to point A. It’s linearity in a roundabout way because it’s progression until it’s not. It’s growth until it’s not. It’s freedom until it’s not.
What truly breaks the cycle is opting to live and not simply exist, being and not endlessly planning to be, enjoying being rather than planning on it. I only realized this…today. However, I don’t know exactly. Sometime between waking up and knowing it was my diagnosis anniversary and accepting the fact that I was actually going to stuff my hands into my armpits because my gloves were sitting on the table at my Airbnb.
To live –
Verb (used without object), lived [livd], liv·ing.
To have life, as an organism; be alive; be capable of vital functions:
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.
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.
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.
There is a photo of me as a young child sitting in a rhubarb patch, looking content. I like telling people I was born on a farm in Vermont. This, of course, is true. Born to parents who went “back to the land” a couple decades after the peace-&-love generation & decades before the trendy, neo-hippy movement of today. Displaced, so to speak; the idealized, flower-power mentality after its heyday had come and gone, and way too soon to sell “Vermont-made” handicrafts on Etsy. Sitting in a rhubarb patch as a child, I was in a little garden paradise, blissfully unaware of the lack of cultural stimulation, full-time employment, and the reality of being 16 miles from the nearest supermarket.
Gardening is a form of regression back to this innocent state, not entirely of course, as I am no longer a child in a rhubarb patch, but enough so that allows for certain worries and concerns to be gently washed away.
In the summer months between semesters, I would landscape. It wasn’t lucrative or as lucrative as I would have liked considering my upcoming needs as a full-time student, but I found myself repeatedly drawn to it. The long hours of labor, the sun and sweat, and the feeling of contentment after a day or a long week were completed. I needed this connection to labor and the earth in those summer months. It was a reprieve from the bullshit of academia, a world I was beginning to loathe. I worked with men who, as children, labored alongside their brothers and sisters, mothers and fathers, in the potato fields in Maine. I had worked with them for several summers. Each summer, I’d return, and they were there, seemingly untouched; country music playing in the shop, lunchtime at noon on the dot, and crass jokes when the situation presented itself. Whereas they saw the job as a means to an end, I saw it as a desperate need to return to the land, like my parents, and get my hands in the dirt regardless of how the future might unfold.
During the initial treatment I completed in July 2016, I was too ill to venture outside to do any gardening. The following summer I was at Mass General undergoing stem cell transplants which, after being discharged, left me with essentially no immunity as well as energy levels that constantly hung well below normal. 2018 allowed for light yard work. I would venture out and, as usual, due to my stubborn nature, would push myself too hard and end up exhausted to the point of tears. Nonetheless, it felt good! I have started early garden cleaning this season. Raking the leaves, spreading a little mulch, trimming back anything that was too lanky last season. These seemingly little pleasures make me happy. Yes, I have to wear the N95, the same type I needed to wear whenever I roamed the halls at Mass General. The sterile smell conjures up numerous memories and nauseates even to this day.
I have been contemplating the reasoning behind my love of gardens and the earth itself. This post (or update) has remained unfinished for some time as I wasn’t sure how to end it — rather, how to articulate the power gardening has over me. What I came to realize is that I can’t fully articulate it, I can’t express it in words as there are none. After my weeks of trying to find the great “why” we perpetually ask ourselves as humans, I do know that there is honesty in gardening, in the earth. A single garden bed has no masks to hide behind; it is more direct and honest than most humans ever will be. A return to the earth, to the garden(s), is the kindling of a relationship that, for me, surpasses the relationships I have/had with my own species. I feel safe within gardens and the earth itself. I can be joyful and happy or sad and mad; the garden, the earth, accepts this and is joyful with me or soothes my sadness.
I didn’t understand this connection for the longest time. In fact, as stated, it took serious contemplation to even recognize the reasoning behind my feelings for both gardens and the earth. Looking back, I can trace this feeling of comfort and safety throughout the years and through the many gardens I have worked in and spent time in. I wonder about that photo of me as a young boy sitting in a rhubarb patch. I don’t want to taint that memory with the ideas and philosophies I have now as an adult, but I can’t help wondering.
Tumor markers were drawn last week, a few days prior to my MRI. After receiving the results I was a little concerned as there was an elevation in one (of three) tumor marker levels. I was riding the wave of positive news regarding my MRI results, so didn’t want to fixate too much on the blood work. Long story short, the labs are fine! The rise in one of the markers, which is slightly above the normal range, is totally normal (according to my oncologist) and has a tendency to fluctuate. I can rest easy now – and I certainly am. After the news regarding my MRI and blood work I am completely drained, yet blissfully happy!
I have had quite a few appointments in the last couple of weeks. I met with my oncologist, and we spoke about the recent MRI. The swelling of the initial lesion in my brain is still stable! As with before, stability is good — excellent! We’ve scheduled another MRI for two months out (mid/late February). With this continued stability, it is unlikely to swell, or continue to swell, more. Though, I am not entirely sure.
I also had a meeting with my neurologist. This was more revealing than the MRI results. As you recall, I wore the ambulatory EEG for 72 hours. All the diodes on my head were connected to a small box I wore around my waist. If any “strange” sensations or feelings arose, I was to press a tiny button on the side of the box. On the EEG reading, this will simply make a note of a specific time, and then, when the neurologist goes over the entire reading, they can go directly to these points and “see” what sort of brain activity was occurring at these specific times.
I pressed the button a total of 33 times over 72 hours. If, for example, I felt slightly dizzy or even disoriented, I pressed the button. I often have these moments when the world seems very distant, or I seem removed from the world. This is very, very difficult to explain. I have tried to articulate it several times. I have taken a step back and am watching the world — an “out of body” experience. This sensation has been so unnerving in the past that I have gone to the emergency room several times.
I was curious how these moments (the “out of body” sensations) would appear on the EEG reading. I was sure that these were some sort of petit mal seizure activity. According to the epilepsy foundation, petit mal seizures, an older term for “absence seizure”, are a type of seizure that causes a sort of lapse in awareness. “Absence seizures usually affect only a person’s awareness of what is happening at that time, with immediate recovery… The person suddenly stops all activity. It may look like he or she is staring off into space or just has a blank look.” This, more or less, sums up the feelings and sensations wherein I am removed from the world, that “out of body” sensation. When I wore the ambulatory EEG (72 hours), I experienced several of these occurrences.
However, nothing on the EEG reading indicated any abnormal brain activity. For 72 hours, everything appeared as it should. Granted, over these 72 hours, there was no reduction of anticonvulsant medication or any other means that, during an inpatient stay for monitoring, a seizure would be provoked. Nonetheless, during these times of “unnerving” sensations (again, the “out of body” experience), nothing out of the ordinary appeared.
This came as a total shock to me. I explained these strange feelings to my neurologist, as I have done in the past, but he again confirmed the results of the ambulatory EEG reading — a reading reviewed by several doctors.
This being the case, he wants to hold off on the inpatient stay for monitoring. “Let’s leave ‘well enough alone,’ Jeremiah.” Again, I pressed him, trying to find answers. I wanted him to pinpoint the reason behind these sensations and explain what was going on within me in plain and simple terms. “… anxiety, most likely, stress, PTSD… a sort of ‘depersonalization'”. This is also the theory of depersonalization that my psychologist holds.
These terms seem so vague. I was expecting to go to my appointment and hear that reading was indicative of these factors; an inpatient stay for monitoring was next in line, and then, after confirmation of particular, definitive activity, brain surgery would follow. My oncologist assured me I didn’t want brain surgery, as does my neurologist. In fact, my neurologist stated rather bluntly that I was to “leave the brain alone!” I insisted that brain surgery wasn’t frightening or an issue as I’ve already had it once. Due to my lack of any formal medical training, my pleas went unheard. I understand why. Of course, who wants to tamper with the brain — especially this left frontal lobe area where the former lesion is located? When a neurologist and neurosurgeon insist that surgery isn’t an option or an option they are very reluctant to consider, who am I to offer an argument?
It isn’t so much that I want to be seizure-free, though that would be ideal; it is that I want answers. I want to know why; why this and why that. The seizures are just one thing I can fixate on when the larger question is, “Why did any of this happen in the first place?” I want to know why! Why can’t one of these doctors give me a solid answer with all their (western) medical knowledge and years of experience?
I am learning acceptance. I have come a long way in letting go and embracing the unknown over these years. On certain days, today, for example, I can sit with tea in hand and watch the sun slowly migrate across the wall, and there is this peace here.
American theologian Reinhold Niebuhr wrote a sermon concerning this. Though it is best known for its initial/opening lines, it is the second part that, upon rereading it, really strikes a chord with me.
“Living one day at a time, Enjoying one moment at a time, Accepting hardship as a pathway to peace…”
I am desperately seeking reasons for this hardship. In doing so, I fear this endless pursuit will overshadow life’s most straightforward, profound, and poetic aspects.
Today, as mentioned, with tea in hand and watching the sun gain its strength each day, I am okay with it — with everything.
After weeks, perhaps months, of trying to decide whether or not to undergo the epilepsy monitoring, I elected to take the needed steps and proceed. Even after registering and meeting the doctor and team of techs I was still ready. Then, however, something shifted and I didn’t feel prepared (emotionally/psychologically) anymore — I even started to wonder if I ever was. Perhaps it was the hospital setting and the rising anxiety that these institutions produce. Or the clinical smell that permeates my unconscious mind, leaving me with a sick feeling in my gut. Or the veggie burger I ate that tasted exactly like the one I would consume at Mass General. Maybe it was the person in the next room who was moaning and crying while amid a seizure and/or experiencing post-seizure horror that caused a terrifying delirium, which is inexplicable. Maybe it was a combination of all these elements, but I decided to postpone the study… in fact, I was almost desperate to leave the hospital as fast as possible.
The process post-study didn’t sound as easy as I hoped. Afterward, Post data collection, I would undergo several neurological tests, i.e., language, cognitive function, etc., to ensure the safety of potential surgical resection. Then, a team of neurologists and neurosurgeons would get together and review ALL the information and decide if I was even a candidate for surgical intervention. This testing/deliberation could take 4-6 months. Though I knew it wouldn’t be so cut-and-dry (no pun intended), I certainly didn’t think it would take that long.
For the time being, I decided to take baby steps. I left the hospital with what’s called an ambulatory EEG. This allowed me to return home to continue resting and healing — both of which are desperately needed after years of treatment and the emotional, psychological, and physical stress this entire ordeal caused. Before leaving the hospital, a dozen diodes were glued to my scalp. These are then connected to a small box that gathers information 24/7. I was also given a camcorder meant to be left on while I’m sleeping, sitting reading, writing, playing guitar, cooking in the kitchen, etc. — basically any place I might be for several minutes. The intention is to capture any possible seizure-like activity via brain waves and on film. Perhaps this monitoring will shed some light on certain elements and reveal potential seizure activity.
Baby steps. Slow and steady…
I’m trying to race through all these tests, not just those related to the seizures, but every single test (blood labs, CT scans, MRIs, etc.), desperately hoping to return… but to where I know not. There is some kernel of normalcy out there — there must be, right? Although I am trying to find it in the past, I know, beyond a shadow of a doubt, that this normalcy I seek, this peace of mind and, dare I say, acceptance, is found right here and now.
I just haven’t gotten there; I haven’t arrived. Acceptance of what is, that ability to live (more) presently, is just beyond my grasp. I know I could easily take hold it, maybe lean just a little farther out, bravely extending, trusting myself in doing so, but I’m held back. The bitterness and anger pull me the other way, back into the known. I am seeking normalcy in this place, in the past, but all that remains some visions and daydreams lead to the bitterness and anger felt presently. I often wonder, when in a moment of clarity, how much I polish those memories to better serve my current state of anger, sadness, etc. This is where the emotional and psychological exhaustion, or at least the majority, stems from; the continuous construction of a palatial past to which a return is impossible.
I ventured to the woods the other day. These were the woods wherein my seizure occurred last March.
My mother waited in the car. I had to go alone. I needed the time to be there, process, and allow whatever might arrive.
The season had changed since my last visit. The snowmelt was no longer pooling here and there along the trail, and neither was the chilly bite in the air that remained for some time, even after spring’s arrival. The summer passed without a visit, and I was too frightened to be in the woods — particularly these woods. I was worried a panic attack might trigger a seizure.
When last there, the trees held tiny buds awaiting the perfect, though often invisible, moment to arrive. They had blossomed and were beginning to turn, on the verge of exploding with such vibrant colors as they do so beautifully here in autumn months in New England. Had it indeed been so many months since I was here?
I felt annoyed that the seasons had passed so quickly, but more so that fear had prevented me from returning here — to MY woods. The day was overcast, and I thought it might rain. I was alone with just my thoughts and memories.
After maybe a ½ mile, I rounded the bend in the path and came upon the place where my seizure occurred. Before this, when I walked in, I tried to stroll and be calm, though I could tell my heart rate was increasing steadily; a thin layer of sweat sprouted on my forehead even on this relatively cool day. I nearly turned around and headed back to the car, to the safety it represented, to my mother, and to the security she conveyed.
Ever-present change is more evident in the woods than most anywhere. This may be why I love the woods; perhaps this is why I am in love with the woods. In March, when I last visited them, they exposed themselves openly. The barely present buds left them almost entirely bare, letting the eyes easily pass through the thickets, thin conifers hoping to grow as tall as their brethren, and a few deciduous trees here and there that seemed out of place. Then, in March, just off the footpath, the untrodden snow still lingered, allowing the shadows of the trees to fall upon the ground, shifting with the daylight. These skeletal structures made them appear even more vulnerable. Soon, they will again return to this place of nakedness, letting their leaves blush and climax in such a way I oft wonder if one is worthy enough to witness it. The autumn rains, winds, or the process of the seasons will again reveal the depths into which one can peer… if one is so inclined.
I have not let the woods teach me anything. Instead, I let them teach me everything and then discarded this knowledge. I’m too damn stubborn to accept the reality and pure honesty of it; Nothing. Remains. Constant. Everything. Changes.
It took me several months to return to the woods, to MY woods. I almost forgot their ability to adjust so quickly to change and what message this might hold for me should I be a willing pupil ready to accept the wisdom I desperately seek. I held onto everything cancer had taken away from me; I roped in everything I could think of, from my first seizure in Chicago to the most recent setback, and said, “This is why I can’t return to you!” The woods seemed like the most logical entity I could blame; after all, who else could I point the finger at?
The woods graciously accepted my anger and sadness, my bitterness and tears. They held no hard feelings. When I walked into them and found the location of my seizure, a soft breeze moved through the branches, showing signs of the fast-approaching season. The gentle wind amongst the trees spoke softly, never demanding to know where I had been. Instead, as the wind tossed the branches, they said, “Welcome back, we’ve been waiting for you.”
I lit some sage, pulled the tendrils inward to my being, and then pushed them away to the woods, trying to cleanse something inside me.
A few days ago, I decided to check my temperature. I was sniffling, probably due to seasonal allergies, but I was also concerned I might have a cold after taking my temperature, which rested nicely at around 98.6F. I took out an alcohol swab to wipe the end of the thermometer.
Immediately after removing the single-use swab from the packet, the pungent aroma wafted. Shaking almost uncontrollably, I made my way unsteadily to the foot of my bed. There, I continued to tremble, a jittery sensation as though I had consumed too much caffeine. My body warmed, almost a flushing feeling. My knee-jerk reaction in such a situation is to reach for an Ativan.
I was worried I might be too unsteady on my feet, so I chose to remain seated. My reaction, which I now understand to be a “trigger,” was activated by the smell of the alcohol swab. I felt nauseated while sitting on the edge of the bed, but I tried to calm myself by focusing on my breathing and posture. I’ve been practicing this mindfulness technique with the help of my therapist in such situations. Although I have Ativan as a backup, I don’t want to rely on it constantly. I managed to breathe through the intense anxiety, and slowly, it began to dissipate. However, it was followed by extreme fatigue, as usual.
While at Mass General, I had my temp taken regularly, every time vitals were taken. After this, the nurse on duty would wipe the thermometer. It was sterile, just like everything else in my isolated room. So great was the need for precaution that for both my transplants, I saw only the eyes of the nurses, doctors, and visitors as surgical masks shielded their faces. It is tangential, but it does illustrate the necessity for sterility and the regular use of alcohol swabs and other such disposable cleaners. I have had numerous experiences such as this: legs shaking while at a clinic, nausea during routine blood work, and extreme panic while in an MRI machine. The list goes on and on and on…
I have strayed away from the term “Post Traumatic Stress Disorder,” though I am not sure why. In many ways, I thought it was reserved for people who had experienced events that were far more traumatizing. I also didn’t want to label it, especially that one. I didn’t want to see myself as traumatized. I didn’t want to be in that place. When I was first diagnosed, I hoped to go to the clinic for a few months of treatment and then return to my everyday life. Admitting that I was traumatized would mean needing more treatment, not physical therapy, but rather addressing the ongoing effects of cancer once the initial battle was over.
My psychologist and I have spent numerous hours both addressing aspects of trauma, how it looks and feels, etc., and also skirting the subject altogether. We’ve danced around it, so to speak, but also avoided entirely that which has been glaring at me, lurking, waiting for me to address it and growing larger each day I didn’t.
I thought of trauma as something that held someone back, something that was fixed in a specific time/place. I thought it was an event that never released its talons, rendering someone helpless & forever there, reliving the past events. I didn’t want that. I am embarrassed to admit I thought I was too strong. The idea above, that of strolling into the clinic and strolling back out after a few months, was how I saw myself. After the completion of my second stem cell transplant, and I was a few days away from being discharged, my oncologist said, “Well, you’ve really trooped through these!” That was me, the warrior. I only let my guard down in front of a few select nurses. I held my tears back until I was in the bathroom, supposedly showering; I’d turn on the water and then sit there crying. At night, I would slip into weird, psychedelic dreams, from which I would wake up moaning, curled into a fetal position, clutching my stuffed animal with such force my fingers would ache the next day.
This is fear. This is pain. This is trauma.
I see the label of PTSD as synonymous with being stuck somewhere in the past, reliving it over and over. The truth is, I have barely, if at all, even begun to let myself do that. To relive and work through an event(s) of significant trauma, pain, sadness & anger is, in fact, stronger. When an alcohol swab sends someone into a tailspin, into a place of panic because of the memory it holds, it is evident that something needs to be addressed, something needs to be unpacked.
I have been told that life post-cancer treatment is the most difficult; it is when the real work begins. It is when things rise to the surface and demand to be addressed. If not, they will have their talons firmly fixed into their prey, and one will be held there forever, somewhere in the past.
healing is a circular path 