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.

“The only absolute knowledge attainable by man is that life is meaningless.”

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.

Blissful Relief

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!

PTSD

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.

This is a memory I hold dear

I had another seizure yesterday. We’re attempting to get the medication right, and I stopped one and increased another. Yesterday, however, I wasn’t at the target dose. That’s the only logical explanation. Regardless, it has left me, as all my seizures have, physically and emotionally worn.

It happened while on a woods walk with my mother. Luckily, she was there. I had enough of a warning that I was able to indicate its arrival. She, in turn, sat me down safely… then it arrived.

I distinctly remember the cold earth underneath me when I started to come around. Though we were in a place along the path with no snow, the earth was cold and damp.

My mind was a jumbled mess, as it always is afterward, but somehow, we managed to walk back to the car. In a post-seizure state, at least for me, nothing adds up for a while.

Today, I realized what was going through my mind as I came to that damp earth: the memory of being a child of about 3 or 4. Evidently, I had asked my mother if, when the snow melted, I could play in the mud. So, I did just that. I sat in this puddle of mud, & plastered it upon my legs. The most vivid part of this is the cool dampness that soaked through the legs of my pants.

I have been told I have the memory of an elephant. Though, I think this was initially meant as an insult, as I tend not to forget things. It isn’t that I choose to remember the positive over the negative, or vice versa, I just remember things. During treatment, the traditional “chemo brain” affected certain cognitive functions, but my memory held strong. They became little islands I could swim to when the storm raged.

I believe in memories and their potent influence to transport someone.

Two years ago today I went to my dear Friend Jose and his partner’s house for dinner. I immediately felt this sense of warmth and comfort in their abode, feeling welcomed. They both exuded this; it came from them as individuals.

I love Chicago. I wish I had left on different terms and not for medical reasons, but such is life. I didn’t, however, enjoy the graduate program I was in there. I feel privileged to have studied there and received my MFA from such a school, but the program, or my home department, didn’t agree with me on many levels.

Jose was one year ahead of me in his studies there, and we became friends. He had a very older brotherly feel, and I felt comfortable sharing ideas and speaking openly about several things. This comfort, naturally, was part of the welcoming energy that greeted me for dinner that night. We sat casually in their kitchen, had delicious homemade vegetable stew, drank sparkling juice, and talked about life and art. I clearly remember walking up several flights of stairs to their condo entrance and, once at the top, wheezing and being winded. It was strange and disconcerting to be so breathless from just a few flights of stairs. The dry cough appeared a few times that night, too. A few weeks before our dinner meeting, Jose and I met at Starbucks and decided to take a little stroll after our tea and coffee. In mid/late March, Andersonville has such a nice feel — spring is just oozing out of everything and ready to pop overnight. The dry cough was present then, and I said I didn’t know what it was from, but I couldn’t get rid of it.

This nagging cough didn’t prevent us from having a lovely dinner a few weeks later. I hadn’t met Jose’s partner, now husband, but I enjoyed his honesty about art. It was a breath of fresh air to step away from the heady, overly conceptual art-school realm and just hear someone speak openly about what they thought and how they perceived the work. We talked about my thesis work, and I was excited to tell Jose how I did, eventually, decide to have this large painting I was working on split into two. I say “painting,” but it was a gestural study that consisted of ritualizing rubbing carbon dust onto linen. When we had last met I hadn’t decided if splitting it into two was the best move for it on a conceptual level. I finally opted to do so because the two, in my mind, divided time, past/present.

The division of time… I haven’t considered this phrase before for the various circumstances that would occur very soon. The following day, the most definitive division of time occurred in my life; I awoke and felt nourished by the delicious soup and conversation, happy that I had discussed my thesis work and received feedback. I was still full, literally and figuratively, from the evening. I felt positive that the end of this chapter in my life coming to a close — I was ready to move on from grad school. However, the cough was more present, and I began to feel worse as the morning went on. It was a bodily feeling, this heaviness, this burden that seemed to rest upon me. This pervasive feeling that something wasn’t right deep inside of me. Sluggishly I prepared myself for the day. Outside, the weather was glorious, and I stood for a few moments in the sun to soak it in. I envisioned the sun’s powerful rays penetrating my being and ousting whatever was causing the cough and the feeling that seemed to weigh on me. I felt even worse as I approached the red-line stop closest to my apartment. I thought it’d be best to return home and rest, to let my body be still for the day, put aside the demands of school and work, and just rest. I turned around and made it just a few paces before my body contorted in a way I had never experienced. This lack of control spread across my face and rendered me incapable of calling for help. It ran down my arm, bent my fingers inward, and took the strength from my legs, and I collapsed, then… darkness.

I hold onto memories as a means of self-preservation. I think, oftentimes, about how I would describe something in a book or how it would appear in a play, how I might see it and hear it from an outside perspective. By description and recall, there is a solidification, a movement from, perhaps, a fleeting moment in time and space to a solid foundation upon which something can grow and be constructed. How would I describe the kindness I felt entering Jose’s for dinner? How would I word the fear I felt when I had my first seizure? In remembering, in actively assisting in the solidification of memories, one can access the warmth during the cold and recreate the laughter during the flow of tears. One can nurture compassion and love for those struggling. Being sick has taught me this. I held onto memories before, well before my original diagnosis, without any real understanding as to why. Like the matriarch of the herd of elephants who leads the other members miles and miles to a certain watering hole during times of drought, memories can save us; they can nourish us.

The photo attached is a still from a performance video Jose and I collaborated on. I’ll refrain from drowning you all in the ‘heady, overly conceptual art school” BS I am happy to have left behind. The basic premise; two beings tethered by a length of rope, each takes a turn walking while the other remains the grounding center, a place of pivot. One can walk as little or as much as they wish. The other merely witnesses and rotates with them. It, for me, was about an exchange of guidance and care… it was about trust.

This is a memory I hold dear.