Tag: f cancer

Butterfly

We named a Spotify playlist “Butterfly.” We did so because one of our last meetings before I fell ill was at the Peggy Notebaert Nature Museum in Chicago. There we watched the butterflies as they fluttered about. The children giggled as they landed on their heads and arms. We all became child-like in that place – even the adults tittered and held out their index fingers, eager for one to take respite there. It was pure glee, but I can’t help but wonder if the butterflies knew what was in store, what epic migration, one of the most significant natural events, awaited them come fall.

One of the first songs I put on the playlist was Raign’s rendition of “Knocking on Heaven’s Door,” mind you, not “Knockin’ on Heaven’s Door,” as the original version by the great Bob Dylan goes. In my mind, I cannot separate that song and the butterflies; their graceful movement, which I had seen just a few weeks before returning home for treatment, is synonymous with this track. Even now, when sitting with my coffee and gazing at our butterfly bush in our backyard garden, I watch them and mentally hear that synthy-laden, electronic drum version. Her potent, albeit angelic voice is layered and drenched in thick reverb. I initially heard it, as mentioned, just weeks after my return to commence my very 1st round of chemo (2016). So, there is an extra layer of chemo-drug-induced and emotionally consumed intensity.

The mind is extraordinary. I woke up today (August 5th) and wished my sisters a happy “Cinco de Mayo.” I was jarred awake by a landscaping crew, and in my mind, the rhythm of their compactor sounded like an MRI machine. In this hazy mental place, it wasn’t August 5th, 2021; it was May 5th, 2017, the date I was supposed to enter Mass General to begin 1 of 2 my stem cell transplant. (This was the original date, but that was pushed back by a month because of my brain surgery.) In texting them with good wishes for Cinco de Mayo, I wanted them to feel a sense of normalcy that I didn’t have on this particular date. (It is my nature to try to protect and cacoon people, especially regarding my health saga.)

It took a strong cup of coffee to pull me into the now. First, I began thinking about my strange wake-up and where I was in mind and heart. Then, as it has been a while since I have listened to it, I put on Raign and sipped more coffee.
Little did I know then that the Peggy Notebaert Nature Museum was this sacred little bubble. Not only for me, though for obvious reasons it was, but it seemed that way for everyone there. The laughing children, the adults who regressed to a child-like place, all stepped away from the world. Then, as my mind does, at least when it’s fully awake and has a bit of coffee, I thought about the people in that blissful bubble and the butterflies fluttering about. Who was giving whom a respite from life; was it the humans gazing in awe at these gorgeous little beings, taken away from their worries and stresses, even if just for a minute. Or was it the butterflies developing a divine connection with a human by landing on their index finger or soaking in the gleeful laughter of children before embarking on a migration of epic proportions?

I will undoubtedly wake up again in a place and time far from here within the next few days. This isn’t solely for the benefit of others, to grace them with a feeling of normalcy, but also for me. I have routine bloodwork in a week (August 11th) and an oncologist appointment two days after.

Maybe I will wake up thinking I’m a butterfly.

“Once upon a time, I dreamt I was a butterfly, fluttering hither and thither, to all intents and purposes a butterfly. I was conscious only of my happiness as a butterfly, unaware I was myself. Soon, I awaked, and there I was, veritably myself again. Now I do not know whether I was then a man dreaming I was a butterfly or whether I am now a butterfly, dreaming I am a man.”

Chuang Tzu (c. 369 BC – c. 286 BC)

Medical Alert ID

One of my biggest fears now, and since my diagnosis, is having a seizure. Obviously, I don’t want to have one anywhere/anytime, but my fear is that of having a seizure in public.
The vulnerability I feel when in the post-seizure state (“postictal”) is horrific. I don’t know where I am, who I am, who the people are around me, etc. Once, after a particularly intense seizure, both my mother and sister were sitting on my bed. Luckily, I was in bed at the time, so I didn’t hurt myself after losing consciousness. I frightened my sister so much and undoubtedly saddened her as well because, for the longest time, I just stared at her, unable to recall who she was.
A lot of the trauma I am currently working through with the help of my psychologist is the initial seizure. Currently, I can feel a seizure coming on. There are indications I’ve learned to recognize, often referred to as auras; these help me to take precautions so as not to fall and injure myself. In Chicago, when the first seizure occurred, I had no idea what was happening. I simply hit the deck. When I awoke, I could feel a rocking sensation and the hum and vibration of what I had come to understand as an engine. This knowledge didn’t help, as I had no sense of identity.
The paramedics had rummaged through my belongings and found my ID. This helped them understand who I was, but when they said “Mr. Ray,” I was unsure who or what they were referring to. “Mr. Ray, have you been doing drugs?” They asked this question repeatedly. I struggled, as I often do when regaining consciousness, and since they had no idea if I was, in fact, on drugs, they had me strapped down to the ambulance stretcher. Later, when in the ER, I discovered the cuts on my wrists from having struggled so much while in transport to the hospital. Again, they asked, “Mr. Ray, have you been doing drugs today?” I began to cry. “Mr. Ray, do you know what year it is?” I mumbled something, but I was unsure of what year it was. When I began to come around and gain a greater sense of who I was and where I was, I told them I was a graduate student studying in Chicago. I am sure the latter was evident in Chicago, but this helped them understand more. Finally, one of the paramedics said, “Ok, Mr. Ray, we’re going to untie your arms, ok?” Sometime later, well after I was in The ER, one of the paramedics came to see me. I didn’t recognize him, obviously. “Hi. Mr. Ray,” he said. I am sure he had found out, after inquiring about my toxicology report, that the only drug in my system was caffeine.
I currently wear a medical ID. This simply states that I suffer from grand mal seizures. This isn’t enough for me; I want it obvious that my medical condition is such that I was a cancer patient, and one of the ongoing ailments, perhaps an ailment for the remainder of my life, is seizures.
… I purchased the credit card-sized ID badge and a lanyard. As I gain more emotional and psychological confidence and the much-needed physical stamina, I hope to continue my walking routine, an oft-daily event that I greatly miss, which helps me process much of the events that have occurred over the past few years. I want the ID to be so evident that, should I have a seizure when out and about, my medical condition will be event, glaringly so. I have faith in my fellow man/womxn that, in such an event, I will be comforted and cared for until I regain a sense of who I am…
The thought of waking without knowing who I am, or even what I am, haunts me. The fear of being strapped down during this postictal time is even more so. The vulnerability, as mentioned, is so great that this prevents me from my outings — any outings, be they a trip to a cafe, to take in a movie, etc. I don’t want this fear to become so great that I avoid leaving the house. Currently, I can see this is where my fear and the ever-growing feeling of vulnerability are leading me.
The aluminum, bright red ID card, which I’ll wear around my neck on the outside of my clothing, will hopefully let me inch out more and more and break this paralyzing fear encroaching upon my life.