Perhaps this is survivor’s guilt.

Our situations were identical in almost every way. 

He was diagnosed with testicular cancer. His staging was the same as mine. He, too, experienced a recurrence that presented as a brain lesion and opted for a stem cell transplant. 

This is where our paths split apart. Shortly after his high-dose chemo treatment commenced, prepping his body for the transplant, he became increasingly confused and disoriented. After sets of scans were performed, it became evident that, though the heavy rounds of treatment were well underway, several more lesions had presented themselves in his brain. The decision was made to stop treatment and return home, enter hospice care, and be around loved ones. Shortly after he decision was made, he passed away. 

Even in writing this, I don’t know where to begin opening up my emotional state regarding his journey and mine and where they veered off and split from one another. I shudder thinking about the fact that my lesions could have multiplied, too. Or, for that matter, the one that did present itself could have been in such an area that it was deemed inoperable, leaving me with more complications than just a stroke and a paralyzed arm. (“Just a stroke…”) What damage could my tumor have caused had it been slightly to the left, to the right, etc? Was I naive to postpone my 2nd round of salvage chemo and head out to visit Dr. Einhorn in Indianapolis to get a second opinion? Was this delay dangerous in such a way that… it’s too much to think about. 

These questions haunt me. They wake me in the middle of the night. Even more so is one I can’t escape asking repeatedly: why am I here and he isn’t? Why am I alive and he … and he isn’t? 

I never understood survivors’ guilt. I had heard about it but never truly understood it. Yes, on a larger scale, anyone who survives cancer thinks about all those who haven’t and, in one way or another, has that feeling. In most cases, guilt might be too harsh, but this particular scenario is apt. 

I loop my posts back around. With my last sentences or so, I always seek to return to the overall idea. Is this good writing? I’m not sure. I do so to keep everyone along the way. My writing tends to drift a little far out, so bringing things full circle will hopefully lead people to say, “Oh, now I understand why he wrote…”  However, with this post and the subject matter herein, I can’t. How do I bring this back around? What closing line or thought can I inject here? Nothing can sum this up or deliver on one’s need for coherency as none of this makes sense… 

Perhaps this is survivor’s guilt. Maybe it isn’t so much about feeling remorse for those who have passed at the hand of this insidious disease, but rather the inability to make sense of it, to articulate it to ourselves and others. As with this post, I want to bring it back around so it feels wholly desperate and there is some understanding to accept the madness of this life and the injustices that rear their heads. But I can’t. Everything is left hanging, nothing but loose ends, dangling strands that I keep tugging at…   

Be well on your journey, Alex

June 13, 1994 ~ June 30, 2020 (age 26)

3rd anniversary of my stem cell transplant

The irony of April 1st

I went to bed last night, frightened of how I might awake today.

April 1st is the date I was diagnosed with testicular cancer in 2016. It is hard to forget such a date, naturally.

The irony, of course, is April It’s Fools Day, but no one forgets such a life-altering occurrence.

I awoke relatively early. I did not get up for the day, just remained in bed, not wanting to stir and disrupt the thought that was on a loop in both my heart and mind;

“I’m a f*cking warrior!”

It wasn’t one thing in particular that I was focusing on or directing this thought towards. Rather, it was the years since my diagnosis and all the trials I have overcome!

The image is my Scottish ancestral crest. The motto which circles the crest is Fortitudine, which means “with fortitude” in Latin. I am proud of this and have it tattooed on my forearm. Every day, I recognize that my own fortitude, courage, and bravery are greater than I will ever know!

Image credit: Unknown

Screenshots

Life is Like Jazz

The elation I felt…

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.

The middle-ground

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.

For the majority of my life, I have relied on art in one way or another

Jeremiah Ray, 2019, Untitled, ink on paper

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.

Dépression Nerveuse

There is sunlight on the wall

There is sunlight on the wall

The wall does not demand that the sunlight stays