I like to start April by reflecting on the day I was first diagnosed, which I always remember—my cancerversary. It’s a significant date, especially since it lands on April Fool’s Day. This year is particularly meaningful; it’s been ten years since that moment. A whole decade has gone by. When I think about this period, I often ask myself, ‘Has it really been that long?’ Then, a small, ordinary event reminds me just how extensive ten years can be.
Recently, I was packing for a trip, and my family’s rolling suitcase was on the floor in my room. While packing, I suddenly remembered a suitcase nearly identical to the one on the floor, which had been in the same spot almost ten years ago.
In April 2016, I returned home for treatment, using a borrowed suitcase. I left Chicago abruptly, hurriedly shoving belongings into a dumpster outside my apartment. My goal was to vacate my room quickly, gather essential items, and go home to my family for treatment. After my orchiectomy, the doctors advised me not to lift heavy objects—though that was far from my mind. With just days to start chemotherapy, I focused on clearing out my room, discarding some items and leaving others outside for passersby. The only things I brought back to Maine were my friend’s rolling suitcase and a backpack I had traveled with many times before. In a few days, my life changed drastically—from living in Chicago to returning to Maine for an uncertain period – from a grad student to a cancer patient.
Once home, I chose not to fully unpack. I unzipped the front flap and propped it against the wall. I told myself that by doing this, staying in this state of not fully arriving, my cancer treatment would be swift and easy, allowing me to return to my life in Chicago. It felt like a hotel stay—being here but not completely. When I did laundry, I put the clothes back in the suitcase, and my toiletries remained there as well. Everything was packed away. I was neatly contained within it. My life, shattered though it was, was secured in this borrowed bag. It wasn’t mine. That’s another reason I enjoyed seeing it sitting there, its lid open and leaning against my wall—visible when I woke up, went to bed, or left my room early in the morning for treatment and came back later in the afternoon, exhausted, drugged, nauseated, and broken. It belonged to my dear friend. To her, it was simply a container for holding items during moves or transit, moving between points A and B. For me, it always represented point A. I was holding myself there, never fully reaching point B, choosing not to arrive, staying in transit to avoid confronting illness and mortality. Now, ten years later, as I prepared for a trip, I pause with a bundle of clothing in my arms and see the suitcase, its lid open and leaning against the wall, waiting—a receptacle, nothing more than a container for transporting things.
I have arrived fully here.
I returned the suitcase to her. On one trip, during one visit, I filled it with various things—not only personal items for my journey, but also things for her and her family, keepsakes from Maine, pieces that held me when I left. Gifts.
Still, I prefer my rucksack. I’d rather carry everything on my back, with stuff loaded from the bottom up, making it awkward and frustratingly bulky – perfectly cumbersome, delightfully minimal.
Pericles, an ancient Greek politician and general during Athens’ so-called “golden age,” remarked that “Time is the wisest counselor of all.”
What wisdom has a decade given me? Over 10 years, have I absorbed the kernels of understanding and the tiny trinkets of knowledge tucked away in the crevices and pockets of that suitcase I eventually unpacked? I am not sure.
Some nights, I wake and stare at the corner of my room where the suitcase sat in April 2016. It’s a strange feeling to be awake, staring into the darkness. In that foggy moment, before full awareness hits, I try to determine whether I’m back in 2016, looking out at the night, afraid I have unpacked and accepted the exhausting 8 hours a day, 5 days a week of cancer treatment, or whether I’m in 2026, searching for a bag that isn’t there, probing the darkness as if out of gratitude for being present, healed, and safe.
Consciousness arrives. There is no suitcase. I am neither coming nor going, and right now, that’s okay. Is this wisdom?
At night, lying on my back, I stay awake and listen to the rattling of my lungs. A wheeze, a strange resonating noise—like damp leaves—if mold had a sound, if abandoned rooms with winds spoke. I insist I am okay. I’ve always said, “I’m okay.” From my youth, my father’s glare, to now, the groan of my lungs. But I knew now I wasn’t; my body was revealing signs of sickness. When had climbing a flight of stairs become a challenge? Why was I losing weight? Why did I wake up in the morning without the will to start the day? The cravings of a young man—sexual longings, morning erections, and pleasuring myself in the stillness of the night—these were memories. Someone my age shouldn’t be dealing with these issues, right? I am a young man, strong and proud with rugged New England blood, generations of good health, and a life without doctors. I kept telling myself, ‘Everything is okay.’ I kept repeating, “Everything will be okay.” But it was never just an irritation in my throat. The cough wasn’t just spring allergies. “Hello,” I say. “You are closer now.” The wind through an open door has achieved form. You have become a presence, a physical form I can’t ignore. “Hello, Jeremiah.” You’re in the hallway as a guest now, and you’ve even taken off your shoes. How could I not welcome a guest? A caller who had been inside, who had been within, was now at my door. Cradling me as I sit on the shower floor, coughing blood into the drain. Wrapping me in the steam of a scalding shower that never warms. You are the fading winter, the arriving spring, and the buds on trees along West Thorndale. You’re sitting next to me on the L.
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.
The irony of being diagnosed with advanced cancer on April Fools’ Day doesn’t escape me. Though I had been told I “might have” cancer several days prior, the diagnosis didn’t actually arrive until this day in 2016. The doctor at the walk-in clinic said that it might be cancerous, but I would need a biopsy to be sure. It wasn’t denial so much as prioritization; I had a thesis to write, a show to install, exams to finish, etc. I assumed a biopsy could wait. Several days later, I woke up in the back of an ambulance, completely disoriented and unaware of my own name. After multiple tests, surgery, etc., I was informed that, yes, it was, in fact, cancer. After such news, under such circumstances, priorities change; a thesis, exams, papers… these would have to wait. Obviously.
I replay this scenario again and again. All of it, not just the initial diagnosis… but every aspect of the last three years. It’s not so much rumination as it is an attempt to understand and make sense of it all. I am looking for something tangible, some meaning…
The truth is, there is none.
Tolstoy said, “The only absolute knowledge attainable by man is that life is meaningless.”
Initial consideration of this philosophical mindset might lead one into deep despair. However, I must agree wholeheartedly.
Tolstoy, however, did find meaning in his life. After publishing Anna Karenina, Tolstoy slipped into a great existential crisis and became increasingly paralyzed by the fear of death. This fear was all-consuming, but perhaps it was a catalyst, pushing him toward finding meaning. He pursued religion and spirituality with the same intensity and fiery passion with which he wrote. His beliefs leaned towards Christianity, but he found that the church, which in his eyes was a corrupt institution, was falsifying the teachings of Jesus. He was inspired by many saints, notably St. Francis of Assisi and others who forsook wealth and worldly goods to pursue a deeper kinship and connection with god.
I want there to be meaning within this, within my journey. I want to find meaning. Looking back over these three years, I am not in a good place tonight. Sitting here trying to pull a couple threads of sense out of the insane tapestry draped before me. That’s all I want; a couple of strands to grasp hold and say, “Look here, I found two reasons! Here are two reasons why!”
I suppose, like Tolstoy, I will have to find my own meaning within all this — to make meaning from it. Maybe one day, when time has softened all this, I’ll find those two strands of meaning and begin to weave my tapestry.
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.
Birthdays are always an interesting point of reference to look back at time. They make a good starting place to look at a swath of years and note changes, growth, etc., to take one birthday, jump backward to the previous year, and look at the space in between.
On September 18, 2017, I turned 35 years old. Initially, I was not excited about the approaching birthday as the years from 33 ½ to 35 (from diagnosis to present) were lost for lack of a better term. This was my mentality leading up to the day — that that time was irreplaceable, gone, etc.
There are two ways to view this: as time being lost, with those years and months of being sick and in and out of treatment, or as something relative. I wasn’t even sure I would live to see my recent birthday. During the last round of high-dose chemo, when I was at the lowest point imaginable, I asked the night nurse if I was going to die. Feeling as I did, I was sure I wouldn’t live to see the following day, let alone my 35th birthday, which was only a matter of weeks away. Thus, the relativity of age, years, and time.
I awoke on my 35th birthday feeling more positive and ready — I had lived to see the day.
I’ve been trying to avoid dwelling on the past and revisiting the years before my diagnosis. However, I can’t help but remember significant moments, like birthdays, that were not overshadowed by poor health. Time now feels like it’s split into two distinct sections: before and after my diagnosis. But in reality, time doesn’t work that way; life is a mix of moments and events that all come together. Focusing on the present and fully embracing our current moments is essential. While there are events I wish I could erase from my memory, it’s impossible to pick and choose our experiences selectively. Who would we be without these moments, both good and bad? Who would we be without the nights we thought we wouldn’t survive and the mornings that surprised us by arriving?
healing is a circular path 