Bodies Chopped by Capitalism

This is my story of how the lived experience of illness forced me to confront ways in which capitalism has truly messed up our health system. Before February 2022, I was quite naïve about how the so-called welfare system or maybe more of an orientation of this country called Australia has been disintegrating in the area of public health. Admittedly, one major factor in this ignorance was the fact that I really did not have to use my Medicare card beyond my very rare visits to my GP.

February 2022 was different. I was told that I needed to see a neurosurgeon so I would know what is happening to my spine. After getting a referral from my GP, I then proceeded to ringing neurosurgeon clinics. And after being turned down by around ten clinics, it did became clear to me that the only way for me to see a neurosurgeon is to first sign up for private health insurance. I was totally devastated, as I had thought that all of my medical needs would be provided for free. After all I have been religiously paying my taxes, which include a hefty medicare levy. Since I migrated here in 2012, I had seen how much money is taken from me during tax time for my medical needs. I had not been sick all this time, and I was foolish enough to believe that when the time comes when I would be needing medical support, I would not have to worry as everything will be provided for free. Not really free, as I did pay for it every taxation time.

As someone that works in the welfare sector, it dawned on me that my only option is to present at the hospital via the emergency department. I did this. The hospital was inundated with patients, as this was also at the height of the covid pandemic lockdowns. The ED doctor explained that I needed an MRI and I should go back to my GP to get a referral. I questioned him as to why would I have to do this. He said that because I am not his regular patient and as it is COVID time, referrals should be via the GP. He added that an MRI is needed immediately. My GP provided the referral and my first big surprise came when I was booking for it. The staff said that I would have to pay in full from my own pocket, as lumbar spine MRI is not free anymore. This is where I realised that our bodies have been chopped by capitalism big time. Of course, I was furious. Only some parts of our body including the brain are still free – in other words, fully covered by Medicare – for the purposes of MRI scans. I didn’t have any choice but to pay. It is at this point that I finally understood why my client who is reliant only on Centrelink payments and whose kids are NDIS patients has secured a private health coverage, even though she is having trouble making ends meet. She pays more than 500 dollars monthly for the health insurance!

The MRI result was grim. The nerves on my spine were already affected. I was told that I should see a neurosurgeon right away. It was totally against my principles to secure a private health insurance, but I was left with no choice. Moneywise, this is not a huge problem for me as I had a full-time job at that time. But I was also boiling in anger because the monthly payments for health insurance was money that  I could otherwise have sent to help support my family overseas. The anger comes from the fact that capitalism is winning again in this situation.

As if the blow of paying for the MRI scan was not enough, I again panicked and angered when I was told by neurosurgeon clinics that they can only book appointments for those who have matured private insurance, as cases like mine always end up needing an immediate surgery. “We cannot just put you back to a public hospital if you need surgery.” This means that I cannot use my recently booked health insurance until February 2023. Again, the tentacles of capitalism are clearly killing sick people. At this point, I felt betrayed several times. While I am boiling in anger, I knew that I had to act quickly, as my spine will not just stop deteriorating. I am again in the cycle of pushing myself in the public health system. With the pain on my back and my legs getting worse, I again presented at the emergency department of a public hospital. This time, I used all my skills in advocating for myself. I insisted at every stage inside the ED that I needed to be seen by a neurosurgeon and I would not agree to be discharged if this didn’t happen. After talking to several ED doctors, at around midnight I finally was visited by a female neurosurgeon. After she explained to me my condition, I felt some relief even though the prognosis was quite dim. I know at this point, that they cannot just send me home if I present again in the ED. This is as though a miraculous gate was finally opening for me. My optimism has been revived. It is worth noting that I sent a complaint-letter to the hospital patient advocate, which I am sure this has helped in allowing me to be seen by a neurosurgeon.

I continued to have such crippling pain on my back and legs that I ended up in the hospital again in March 2022. This time, I was admitted in the neurosciences ward and a whole team of neurosurgeons have examined me. The final verdict is to administer an epidural steroid injection. I felt hopeful that with a series of injections, maybe my spine would cooperate and I would not be needing any surgery in the future. Although at the back of my mind were the voices of the neurosurgeons saying that there are far too many cases similar to mine where the injection only works for a certain amount of time. Voila! The surgeons were right, as by the end of May I felt a surge of pain on my back and legs. I informed the neurosurgeon about my ongoing pain over a scheduled telehealth appointment and I agreed to have a second epidural injection. On the day this was booked to take place, I just was about to go out of my house when I received a call from the hospital. “I am so sorry to inform you that your injection will not happen today due to the machine not working.” In a rich country like Australia this is happening! This left me enduring so much pain for another two weeks as the rescheduled appointment is only possible after this period. I am almost begging my spine to behave until the new date. The 2nd injection did not have an effect, as I continue to have an increasing level of pain.

At my scheduled review appointment via telehealth, I discussed my current situation with the neurosurgeon.  She instructed me to present at the ED right away. By the time I arrived at the hospital, I could hardly walk. This time, I was admitted to the ward right away. A suite of medicine, including high dosages of steroids, was introduced to my body. The surgeons announced that they were unable to operate on me, as I needed to be free from COVID for 8 weeks in order for the anaesthesia to take effect. After four days, I was sent home with a script for various pain medication.

Taking 23 tablets a day of various pain tablets did not deliver the desired result. The pain continued to escalate and in less than two weeks, I was back at the hospital yet again. On my first day as an inpatient, the decision was to undergo emergency surgery. However, the following day another neurosurgeon said that my case will be reviewed again during a case conference and the surgery might not happen this time. She ordered new tests that I needed to undergo and that the 3rd and last epidural injection should be done as soon as possible. There is a twist though as she further stated “we cannot administer your third epidural steroid injection at present as the list is full. It will take two months before we can do it for you.” The only assurance she can give me was the referral she can do to a private clinic across the street, so I can be prioritised. Again, I have to pay in full. And I also need to have a nuclear scan, so they can test whether my bones would be able to handle the surgery. “Dread” was how I described my emotion upon hearing the word ‘nuclear’, as I only associate it to nuclear weapons. I’m sure this was something very serious, especially that the request was also categorised as urgent. I was discharged again after a few days as the doctors made it clear that they need first the result of the nuclear scan.

For my third injection, I have nothing but repulsion to the system that continuously kill people in the name of profit. If I have no means to produce the money needed for this procedure the message is clear – just watch yourself decline in the fastest way possible. The injection to my spine is crucial, as this is the only way for me to be able to undergo the nuclear scan which is now a prerequisite for my eventual surgery. I found myself again reflecting on all the other people who just don’t have the resources for these kinds of crucial procedures and tests. I had to rely on my credit card and prevent myself from thinking about payment when the due date comes.

During the following months, I continued to be IN and OUT of the hospital. Every hospital admission was marked by too much distress on my part. I had to prove myself worthy to be admitted every time I presented at the emergency department. On one occasion, I had to wait for more than 5 hours after being triaged due to the non-stop influx of ambulance vehicles. During this time, even those elderly patients that came via the ambulance were still placed in the ED waiting area. I was in so much pain that the only way I could trick my mind was to take a call from a distressed CALD woman who was asking for help from my community organisation. I was lying down on the chairs as this is the only position that the pain is a little bearable. I ended up talking to her with the background noise of ambulance sirens and the announcements to medical personnel via a paging system. She was able to guess that I was in the ED waiting area, as she is a nurse. I was able to provide her with the family violence crisis intervention that she desperately needed, while I also benefited from our conversation, as my mind was diverted from the pain that was consuming me. I must admit that I can only do volunteer work over the phone in a very limited capacity, due to the level of pain that I constantly battle.

The Buzzer Lady

I finally had emergency spinal surgery just before Christmas 2022. Before this, I had to advocate for myself on all levels, calling the hospital every few days regularly. During my countless stay in the hospital I befriended a good number of people, from patients to nurses, orderlies, and other hospital staff. As my mental health gradually deteriorated due to the amount of stress and anxiety that I constantly deal with, I made an active decision to make myself useful to others even if most of the time I am the one benefiting from these informal friendships. I became the “buzzer lady” in every ward that I am placed in as my wardmates are usually elderly people and are tied to their beds. They would call my attention if they need the nurse, and I will get up and use their buzzer to call the nurse. On occasions when I myself cannot get up due to the crippling pain, I would buzz the nurse from my own buzzer and just tell her/him that it is for another patient. Due to the number of admissions that I had in the hospital, there came a point where they instantly know me already. The staff that are in level 9 know me even if I am a patient of level 10, and that is because there are times that level 10 is full and they end up squeezing me in at level 9. There were two admissions where the nurses said to me that they will convince the surgeons to not discharge me as I am still in too much pain. I did say to them to not do that as at the end of the day the surgeons have the last say and their hands are also tied due to the limited number of beds and staff available. One of the side effects of the medicines that I take is insomnia. There are times where I cannot sleep for fifty hours straight that I would talk to my roommates on end or if they fall asleep I would just enjoy the overlooking scenery courtesy of the hospital window while listening to what is happening in the hallway. I could hear the conversation among nurses or between nurses and some patients who obviously have also mental health issues. From these exchanges I would appreciate greatly the patience and care that nurses and other hospital staff have for the patients.  From all my hospital visits I have accumulated a whole heap of life stories from my fellow patients and hospital staff. Every first day of my hospital admission, the staff would instantly recognise me and would be torn between being happy seeing me and at the same time sad that until now I am still unwell and surgery has been very evasive to me. Nonetheless, I guess I have managed to have a new family in the hospital:)

So long as capitalism continues to creep in the public health system and politicians turn a blind eye to the ever-growing need for more resources (including additional staffing), patients will always be likened to be in a raffle draw where those that are picked up are the most lucky but also are in the stage of near death. Patients’ bodies will continue to be chopped in the name of profit. It is utterly awful to feel responsible for your co-patients and to end up consoling yourself whenever you are sent home even if your presenting health issue has not been resolved as the other patients are way worst than you. Why is it us patients adjusting and minimizing our own suffering so we can feel better even if only in our minds as our physical self is still in misery?

Thanks to my being an activist and a welfare worker I was able to navigate the very complicated public health system, and I did not end up losing muscle and nerve functions before they operated on me. I must say that the doctors did tell me that they needed my spine to be in a much worst condition so it will be easier to operate on. They explained it to me in medical terms but how I wrote it is what they are trying to say. Also, reading between the lines when they were talking to me, it was far too obvious that they do not have any capacity to prioritise me as there are too many elderly patients who are needing emergency surgeries. Being categorised as needing emergency surgery in some of my admissions and to end up being placed in the surgery waitlist as a category 2 patient in October is a very clear indication that they are operating on very tight resources. After all, spine is only next to the brain and heart. I am also better than the older patients as I am still able to stand up and I am way younger than them. There you go, even myself is adjusting to the evils brought about by capitalism :(

I hope that with this short story of someone who traversed the thin line separating the healthy and the disabled we realise that it only takes one illness for a person to lose a lot. This short-lived experience has given me an insider’s point of view of how messed up our public health system is. However, I must admit that this is just a small part of the bigger whole that many of us as disabled persons have time and again have to traverse and to contend with. Every journey and episode of illness (for some of us it is a continuous never-ending journey) is marked by frustration, helplessness, anger, anxiety and a whole gamut of negative emotions but also of hope and renewed vigour to fight this oppressive system by continuing our advocacies in any shape and form. We continue to choose to prevail no matter what our circumstances are.

NGG

31Dec.2022