March 30, 2018. It was Good Friday. I woke up exhausted. I hadn’t shaved my beard in weeks, and the sleep deprivation was evident on both my eyes and face. As with every other day back then, the first thing I did was check up on my mother, who was still asleep. It was time for some of her meds. I helped her just as I had been doing over the past months, crushing the largest pills and dissolving them in water like she taught me so that it’d be easier for her to swallow, given the frail state of her health.
A leiomyosarcoma on her liver, finally correctly diagnosed around September 2015 after a couple mis-diagnosis earlier between July and August, had advanced to Stage IV after the nation’s severe medicine shortages — courtesy of the Venezuelan socialist regime’s mismanagement of it all — had left her unable to receive the proper life-shaving chemotherapy for nearly a year now.
To add insult to injury, my mother was a doctor, an anesthesiologist with a handful of specialties, including palliative care, but not even her friends were able to find the life-saving medicine she needed.
Her health had drastically deteriorated since February 2018, I now think that, in a way, she was holding her own as best as she could until she could celebrate her 60th birthday on January 31, 2018 — a bittersweet celebration, suffice to say. We had made a deal where she picked the cake for my birthday, January 9, and I would pick hers instead.
Good Friday meant that most commercial establishments in Caracas, the capital city of Venezuela, were closed to observe the holiday and, to the surprise of no one, there was also no running water in the city.
Maintenance – that was the excuse employed for a week-long shortage. There’s always an excuse, each one less believable than the last. A “burst pipe,” “maintenance,” and yet, no matter how many repairs or maintenance works they carried out, the service never improved, it just kept getting worse and worse.
I asked my mother that morning if she would like something to eat and she requested empanadas, a well-known staple of my country. The fact that she suddenly had the appetite for something made me rejoice. It had been a very difficult and painful week for her.
I left her under the watchful eyes of a cousin and my brother, took her car – a banged up but still working Volkswagen Jetta, and drove around Los Chaguaramos. My quest yielded no results as the food stores were closed due to the Easter holidays, thus I returned empty handed. In an even more surprising turn of events, she requested an alternative: hot dogs from a place that I saw was open during my search. And so, at noon, I went to Crema Paraiso, and got her exactly what she wanted.
What I didn’t know at the time was that I was fulfilling one of her last wishes: to share a last meal with her two sons. The words she had told me just forty-eight hours earlier were still seared in my mind:
“I think you need to start looking for a hole to bury me in.”
She had said to me two nights past, a Wednesday night I will never forget, a night that she spent in pain, a night that I can still see when I close my eyes. I accompanied her that night, not letting her see my tears as I, a thirty-year-old man at the time, broke down.
She was no longer able to walk on her own, not even able to lie down on her bed without assistance, devoid of the strength to even hold a small glass of water. After our lunch she decided to rest, and I complied, helping her go from the wheelchair she had borrowed to her bed — a routine that always culminated with a kiss on her cheek and a “I love you,” from my heart.
I spent the afternoon letting her rest, not without constantly checking on her. A little past 07:00 p.m. I went to wake her up as she had previously requested, because our evening one-hour ration of water was going to begin at 08:00 p.m., and I was going to once again help her shower.
There she was, asleep and in pain. I woke her up and helped her go towards the bathroom. That’s when she started to faint and become incoherent. No matter what words I said to her, she didn’t seem to understand me, and spoke of things that weren’t accurate to reality.
I started to panic. I had never seen her act like that. My head spun around, my hands shook, and I couldn’t breathe properly.
With her phone in her hand, I called one of her colleagues and asked for help. I also called the closest relative I had, my aunt. The water ration arrived on time but for once, I didn’t care at all. With the assistance of my family and the company of my aunt, we helped our mother sit in her failing vehicle as I silently implored that banged-up Volkswagen to not fail me at that crucial moment — because just a month before it had left me stranded after an electrical problem drained its battery, and the workaround, because I could not find the required spare parts to have it fixed, was to remove the battery while the vehicle was not being operated.
My brother stayed with my younger cousins and I drove through the dark and almost barren streets of Caracas that night, all the way to the Miguel Perez Carreño Hospital, the place she had dedicated sixteen years of her medical career to, the place she would end up dying in. I skipped traffic signs, ignored red lights – none of that mattered to me — my mother was dying and she needed help.
The entrance of that hospital’s emergency unit had been militarized long ago, and there was not a moment where it wouldn’t be crowded and hectic, even at such late hours, with the indolent presence of the National Guard and the Socialist regime’s Bolivarian Militia ever so present.
Clad in their beige and ochre military-esque outfits, with a red shirt underneath, and black boots on their feet, they are there to provide “security” alongside their National Guard superiors, and with their watchful gaze, they ensure the “good functioning” of the hospitals — in other words, they’re there to keep both the staff and patients in check. This was, after all, a socialist regime with one of the worst health crises in recent history, one that they’ve worked so hard to obfuscate from the rest of the world, so you best “behave.”
Other than patients, most people weren’t allowed in, and so they must wait outside, sitting on a limited number of concrete benches surrounded by a fence that segregates you like cattle, with despair, uncertainty, and the cold outside wind as your only companions.
They let me in and fortunately, a nurse brought a worn and derelict wheelchair for her, as I, in my desperation, did not bring the one that was borrowed to her with us. A hospital that had a shortage of wheelchairs, like almost everything essential that was scarce.
After a brief interrogation by the staff, I was instructed to take her for an X-ray analysis in the company of a nurse. If you were to ask me on which floor the X-Ray room is located, I could not give you an answer. I don’t remember. All that mattered to me at the time was my mother, sitting on that wonky wheelchair. Everything else was a blur.
The room, much like the machine it hosted, was in a state of utter disrepair, worthy representatives of the state of Venezuela’s public health system — pride of the Bolivarian Revolution. The painting on the wall, cracking and peeling, only served to complement the ruined aesthetic, while the X-ray machine, jury-rigged, was barely functional. The machine’s arm and contraptions were so worn out that a great deal of strength needed to be applied to it for them to move.
The machine was so derelict that the operator asked me to help her unjam the device’s arm and hold it steady. I held the machine with my arms as instructed by the operator, who did the scans. Certainly, there’s a chance that I received my own dose of God knows how much radiation from the machine, but I didn’t care at the time. Looking back, I now remember and realize what my mother used to say when she narrated to me the times she had to help patients get X-ray scans, from helping them stand up, to woes with the machinery.
The only thing in my mind at that moment was my mother, and the words that the staff said to me exactly three weeks past, on the evening hours of March 9, when I had to take her to that same hospital when she wasn’t feeling well.
“Her tumor has grown considerably,” said a doctor to me on that day, right after another nurse had administered a dose of rare-to-find human albumin serum — smuggled into the hospital by one of her friends.
After the X-ray procedure, I took her to a shared room in the emergency area. The staff tended to her and prepared what in the following hours would become her deathbed. The rectangular shaped room was not large by any measure. Narrow windows on the wall opposite to the door let a modicum of sunlight in, but in that dark night, the fluorescent white lights were at their brightest. That room had four beds and she had been assigned the second one from the left. The leftmost one was empty and the third one was occupied by an emaciated brown-skinned elderly man, whose head wound was being cleaned and wrapped with fresh bandages. The nurses’ voices, the grunts and gasps of that elderly man, and the heartbeat monitor assigned to my mother are the sounds that I can remember.
The bathroom right outside that room was a testament to Venezuela’s health care system. The stench was utterly nauseating, most of the toilets lacked seating and tank, not even a single faucet remained on the sinks, and it’s in your best interests if you use your phone’s flashlight to get some light. That much I came to know about that bathroom when I entered it three weeks before that terrifying night.
My mother, who I believe wasn’t fully lucid at all, complained when the nurse removed her wig and handed it over to me. Her precious hair had long since been claimed by chemotherapy, but she never felt comfortable without it except at home. Her rose pink rosary, made of a cheap plastic, was taken off from her neck and given to my hands. I ended up passing it to my brother, and I told him to always treasure it — never lose it.
The nurses instructed me to wait outside, and it was at that moment when I kneeled to the ground and cried, surrounded by other patients, their relatives, and strangers alike. I was falling apart because my mother was dying, and there was nothing I could do.
Powerlessness – that’s a recurring theme in Venezuela. Watching the people you love suffer and die, needlessly, because of a broken system. Knowing that somewhere, in another land, run by a more component government, resources exist that might have helped her, and knowing there is absolutely nothing you can do to obtain them. It’s a feeling I live with every day, but never more than that after March 31, 2018. This feeling of powerlessness, that I failed to save her, is something I have not been able to overcome, even to this day.
The staff tried to calm me down and gave me a few tubes with her blood along with a list of tests that I had to get done outside the hospital, for they lacked the reactives and materials to perform all of the tests at their labs. They said they could handle some of them as long as I provided them with sheets of paper to print them because, believe it or not, paper was yet another resource that the hospital lacked. I had some old tests of hers that were no longer of relevance to the current situation, and so they printed the new ones on the other side.
As for the other tests, which were of utmost importance, I was in no driving condition, and with the help of some of my cousins who had arrived at the scene, we drove through the streets of Caracas, in hopes of finding a private laboratory that happened to be working on Good Friday.
After what seemed like an eternity, we found a place. A couple million bolivars were spent on the tests, the six-figure amount not being outrageous by any means, thanks to the raging hyperinflation that devoured the country’s currency. The amount I paid for them in Venezuelan Bolivars was approximately equal to five United States Dollars, give or take.
I was instructed to wait, and the passage of time — or at least its perception — slowed down dramatically. If only it had all been a nightmare, if only I could have woken up and gone to my mother’s room to give her a kiss, if only.
The results were alarming. The toxicity that the cancer had inflicted on her liver had gone haywire. I returned to the hospital and handed the blood test results over to the staff, who filled her medical history, asking me everything with detail, from the type of cancer she had, to the chemotherapies that she had received since October of 2015. Gemcitabine, Docetaxel, Ifosfamide, Mesna, those are some of the words I recited.
She was asleep, and I wasn’t allowed to enter the room she was in, so I was instructed to leave the premises and return in the morning with a fresh set of bedsheets, adult diapers, and other supplies that hospitals no longer provide their patients with. It is very common in Venezuela for patients, or their families and relatives, to provide hospitals with even the most basic type of supplies, especially those that are used during surgeries and procedures. You must bring your own bedsheets, towels, and even gauze sponges. This is a practice that is not only limited to public hospitals, as the worsening state of the country forced private clinics in Venezuela to adopt this “bring your own X and Y” policy as well.
When I returned home I was in shock, but I still had to inform my brother, who was going through chickenpox, that our mother was to spend the night in the hospital. I’ve never been one to inflict any type of pain on him but, in that moment, my words, as soft as they were, pierced his heart and shattered his fragile mind.
There was no sleep for me that night, no rest, no respite. The next morning I went to pick up the one item on the list that was missing: the diapers. Another “millionaire” purchase and minutes later there I was, delivering everything to the staff. Yajaira Jimenez, a nurse that worked with my mother at the Pain and Palliative Care Unit that she ran for sixteen years, had arrived at the hospital, and had already spoken to the doctors. She was the one to convey the truth, that my mother was not going to make it.
Her liver was failing. It had given quite the fight to that cancer, but without proper treatment, there is only so much fight that her body could give against such a rare malignant tumor. The poisonous toxicity had most likely spread to the rest of her body, that’s the general gist of what I was informed. The odds were against my mother. Once again, I broke down, and Yajaira’s words of comfort are something I’m grateful for, something I very much needed in that moment.
In spite of the grim news, I was also given hope that they would attempt a treatment to see if her condition improved. Yajaira had also arranged for me to see my mother in between the nurse shift, one last favor to her former boss and to me. I waited outside the hospital’s emergency room until the coast was clear so that I could go in, in what was perhaps the longest wait of my life.
I attempted to call one of her friends and I desperately cried and said that if only I had been able to find the chemo she needed then she wouldn’t have been in that situation. She appealed to logic as a means to calm me down, mentioning the chemo she had procured, while not exactly the same, was better than nothing. The rest of the conversation I cannot recall. I was in no condition that morning.
Hours later, I got a phone call with instructions so that I could sneak in and see my mother one last time. Her condition had worsened so much over the past hours. She struggled to breathe, her eyes rolled, and what was left of my resolve vanished in an instant. In tears, I held her hand and promised her that I would always love her, that I would always take care of my brother, Christopher, that I would see and do everything in my power to get him out of the Venezuelan nightmare, and that I would build a future for him — a good one, away from all of the pain and suffering of the past years.
I stayed with her until the nurse shift occurred and was told to leave. A part of me died in that room, and the rest was left broken and shattered in a thousand pieces — I just didn’t know at the time. I returned home knowing that she was not going to make it, but also clinging to the hope that the treatment would at least improve her condition. All I could do was pray for a miracle that would never come to pass. Nonetheless, I was instructed to inform my brother, and the dread in his eyes is forever burned into my mind.
The next hours became the longest and, looking back now, I realize I spent them in an utter state of shock. I don’t remember much from that afternoon other than its sunset, and that I briefly passed out at some point during the afternoon. One of the doctors she had trained and passed down her knowledge to gave her one last mercy in the form of a dose of morphine — smuggled, of course — that I hope gave her some peace during her last hours.
At around 09:30 p.m., on that fading Holy Saturday, I received the one phone call that I dreaded the most — she had passed away. My brother went to my room and I told him. We both cried. I didn’t know what to do. I just hugged him and told him that no matter what, I would always take care of him.
I sent him to my younger cousins and, with great haste, I was taken back to the hospital. To see her lifeless body crushed whatever was left of my psyche and, I suppose, some of my sanity as well, which I never got back. I filled, or rather, answered the doctor’s questions to fill her preliminary death certificate in a complete state of shock, and then I was instructed to deliver them to the morgue.
The person attending the morgue happened to know my mother. In years past, that person had operated one of the few working elevators in the hospital and often carried my mother to her workplace, which was located on the seventh floor of the hospital. During those days, that person’s sister had been diagnosed with cancer, and my mother had given her all the help she could, providing her with the required information and even preparing the medicine for her treatment.
“She was a good person,” she told me of my mother. As a last token of gratitude, she expedited the paperwork and skipped some formalities, sparing my mother’s body from decomposition at the hands of the incompetent bureaucracy. Mind you, it is very common for the bodies of the deceased to not even have refrigeration, and coffins are often unaffordable, let alone a burial ground. It was late, and the best course of action was to finish the paperwork process first thing in the morning.
Over the past years, I had come to become acquainted with so many people and communities due to events that took place in the world of video games, as well as me using my personal Twitter account to narrate my own iteration of the Venezuelan nightmare and the ongoing collapse of its socialist system.
That night I received so many messages from across the globe. For someone who has always been a social outcast, always at the fringes, and never fully part of “the normal society” it reminded me that my brother and I were not alone.
To receive so much support from friends and strangers on Twitter, in the worst hours of my life, meant the world to me. It still does to this day. To know that a stranger at the other side of the world lit a candle in prayer for my mother was such a heartwarming feeling that I’ll be forever grateful for, even if I’ll never know that person.
There was some weird solace in the fact that my mother was no longer in pain, and that after two and a half years of a fight against cancer, with everything stacked against her, she was resting in peace. Regardless, sleep was something I would not get on that night either. Proper sleep had eluded me since her initial diagnosis in 2015, and it continues to elude me to this day.
Easter Sunday, I woke up defeated, getting out of bed by mere inertia. With all the initial funerary arrangements done, I returned to the morgue to identify her body.
The stench of decomposition emanating from the rows of bodies in that room, the lack of proper refrigeration… nothing could’ve prepared me for that moment. There she was. Her body stood out from the rest, as she lay covered in the same green bed sheets that I had supplied the hospital for her deathbed, sheets that now acted as a substitute for the bags that the hospital no longer had any of. Her wake took place during the afternoon hours of that Easter Sunday, and the burial took place around noon in the following Monday
Sabina Elisa Romero Ferrer was a force of good in this world, a good doctor with six different medical specialties and a caring mother that perhaps I never deserved to have. She faced so much unfairness in her personal and professional life, even from her own family.
The indolence and corruption of the Venezuelan Socialist regime had denied her a fighting chance against the leiomyosarcoma that plagued her liver through the medicine shortages, the times of protest, the lack of adequate treatment and care, the mistreatment received from the authorities, and even the refusal to give her a proper retirement even with her diagnosis in hand.
The fight was rigged against her from the start; two and a half years of inhumane hardships stemmed from such a perverse ideology and yet the Socialist regime had the audacity to deny the existence of this barbaric humanitarian crisis to the world. But in spite of having to fight such a rare form of cancer, my mother never gave up on her dreams of having a better life for the three of us, away from the calamity of Socialism of the 21st Century.
Everything she wanted for us to have before her cancer dictated the course of her life — it all became my driving force, the promise I made to her on her deathbed became my raison d’être. Christopher is the reason for which I keep going and the reason for which I refuse to give up. He would have that better life that she wanted for the three of us, even if it was the last thing I would do in this life.
If only I had been stronger, smarter, more resourceful, then perhaps her fate would have been different. I failed to save her, and I’ve hated myself for that ever since.