Coronavirus – Why the caged bird sings

It’s taken a global pandemic and sheer utter boredom for me to remember that I not only have an immunosuppressive disorder but that I also have a blog to vent my current frustrations.

So I am back, and unlike all my previous posts I won’t start by making any promises to write a blog post every day I will say it as it is – when the words want to come, I find myself here.

I’ve been reluctant to write anything because so much has happened since the last time I was dreaming on a plane about going on an exchange trip but there is a much bigger threat we are all facing that deserves my attention – COVID-19 and I feel strange discussing my adventures traveling in the US without addressing that right now might be the scariest time to be alive and in danger.

Living in the US I have become much more vigilant about watching the news, something that I never really cared for in New Zealand mostly because current events were never as significantly eventful as I  have come to find them here. When the term virus started it was scary-  but I never really understood what was coming, as so many of us took for granted what was going on. At first, it was a distant threat but there was always as mention that immunosuppressed people have to be more fearful than everyone else. The truth is I didn’t and probably still don’t comprehend what is happening because as I once remember in my health psychology class years ago, when a person gets a transplant they feel perfect and fine and other than taking their tablets every day, they feel as though they are just ‘normal’ and other than some awful tablet side effects I am, as far as I know, just like you.

So it was hard to hear everyone around me panic (for me) while I sat there thinking hell nothing can go wrong this is just a passing issue but then the terms that I have become accustomed to suddenly became the ‘new norm’ for everyone else. Wash your hands (20 seconds no less), wear a mask,  stay away from sick people – these phrases, these actions, these behaviors I am sorry to say are already the daily routines for every single immunosuppressed, chronic illness human being – so all I could do at first was laugh, that suddenly everyone was joining in my parade.

But things became worse quickly, I moved from my college town apartment at the start of this year to the big city of Indianapolis to be with my boyfriend which meant that 3 times a week I was commuting on a dingy bus to classes i.e. I was exposed to whoever else was joining me on my trek. People started to wear masks probably before I even thought of the idea and I went from being 60% vigilant to 99% scared. Everything soon started to change faster than I could have imagined, my doctors were asking me where I was and what I am doing, my teachers were asking what provisions I needed and I, like everyone else, went from attending classes in Bloomington to quickly sitting at home on Zoom, although I started a week earlier. Even at this point, I was not comprehending what we were dealing with, to be honest, the opportunity to not commute on that bus and be at home every day seemed like a pleasant gift. Beyond this was the news, which really started to become a tally for deaths and a rotating clock of disasters, one by one more people were starting to become infected and each day what we had known about this virus changed, it was not just a threat to older or sicker people like myself, but younger fitter individuals were struggling to lurch themselves from its peril.

So began new issues, going to the grocery store, the fear turned into hoarding and me becoming locked with no end in sight. It’s hard when people project their fears on you and all of a sudden you’re trapped. Although I had an insight to the severity of what we are dealing with a couple of times as I have had my labs done at the IU hospital, was greeted by police in masks, tested and escorted by the police to have my blood taken for my kidney – that I won’t forget.

In high school, I missed that graduation because I developed peritonitis, a horrific infection that often comes to dialysis patients that use peritoneal dialysis.  While my friends celebrating with their family at the end of the high school era, I was locked away in ICU at Middlemore hospital, one of my finer moments. I hated every part of missing that graduation and then against my will my bachelor’s graduation went on without me, this time because I could not fly home to New Zealand in time for it. So I put a lot of eggs on this Masters’s graduation celebration and I felt the pain that everyone did when it was canceled. This sad occasion reminded me that for most kidney kids, most diabetes kids, we miss out on a lot of things and this is the first time that the whole world is experiencing what many chronic illnesses patients deal with daily – putting their health before their desires. I’ve missed birthdays, missed camps, took a tablet that made me fail chemistry (a story for another time), but when I have a plan 9/10 times my body has a different agenda and more often than not the things I am most excited about the result in a  struggle between what’s best for me vs what I want to do. I have been fortunate enough to have family and friends that want me to lead the most ‘normal’ exciting life that I can, so I’ve done things like taking an IV drip with me to watch a rugby game, been carted from an Usher concert in an ambulance (because I just could not miss Usher), traveled to the US without proper medical guidance and complete dialysis in South Africa, Australia, and even Malaysia. Yet not all of the people I know have my lucky fortunes so even though I am locked in a room in quarantine in what happens to be the worst country to be in right now, I’m grateful to be here despite not knowing what will happen next. Being born with a medical deficiency is exactly that, imagine starting a race with all your peers but you have to carry 20 pounds on your back, imagine trying to keep up with everyone else when truthfully the odds are against you.

I hope everyone starts to see a glimpse of what life might be like for a large percentage of us and realize that while you only experienced 2 months of it – we fight daily and your awareness can make a difference. Being in this quarantine is not really that bad, reading books and watching Netflix is really not something to complain about so I’ve become much more aware of what good things I have as opposed to what’s bad. I am too lucky, even if I spend a lot of time in the hospital I always come out fine, no matter what. So this period is just making ME aware of what gifts I have been given, and the fact that so many other young sick kids or children born without access to education, food, or money are all just starting the race without support.

So while we all have this time to reflect and make choices – as I question all of my choices – I hope you, reading this start to wonder about what choices you make going forward. Whether travel is necessary, whether you appreciate having had time with your family or who out there that you know may need some help carrying their starting ‘load’. Consider those who lost their jobs and those fighting to keep their lives at this time. I’ll report back soon on where I am and what’s the latest.

 

20th December – Plane from Indianapolis to NY

Post exchange: When I was planning to go on the exchange I just knew that I had to do it. Looking back I knew, because people told me, that this trip would change me but I honestly had no idea or thoughts as to how. Now, as I am sitting on the plane waiting to leave the country I have time and nothing else to do but reflect and wonder whether or not they were right, Have I changed? I want to say that there was some drastic change […]

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Countdown to 25 years and 25 ‘achievements’

It’s my crown/diamond/whatever you call it birthday on the 25th of November. Rather than be happy about it, I’ve been desperately avoiding the topic. Maybe I could be having a quarter-life crisis or something, if those are even possible, but I’m beginning to question what I’ve been doing with my life and what I should be doing. If you know me then you know I love my birthday it is the one most exciting and incredible things that happens every year. Normally I try to drag it out as long as possible, figuring […]

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A letter to my donor

  Dear Donor, I am writing this as we fast approach two years since the day you decided to give a part of yourself to me. I recently learnt something about you that honestly changed my whole perspective, not only towards my own life but towards others and the power we have to those around us. All this while they had told me that there was a connection between the person that my friend Leah had donated her kidney too and you.. the person I received my new gift […]

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Aiming for freedom (part one)

So through some miracle I have both landed and managed to survive for one month in this great land of America, that in itself is a true shocker. Ofcourse however to commemorate my one month here my body decided to develop an infection and send me into what the doctor described as septic shock … and here I was stupidly thinking I wouldn’t have much to write about health or otherwise.   So, before I get into what happened exactly on my one month anniversary here I should probably […]

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A new perspective, a year of madness and a list of nonsense later

  Right now I am supposed to be starting the first reading for my law class which starts tomorrow so naturally, I’ve decided to start blogging again. If I stare down at my laptop everything feels the same, I am 17 plugged to a machine cleaning my blood typing and wishing things were a little different. But things are different because I look up and the room, the smells and the place I am in both physically and emotionally is unfamiliar. I look up to see a girl sitting […]

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Cut from the same cloth: sitting in the waiting room

I never really paid much attention to any of the other patients previously, instead of focusing on their stories I was too busy writing my own. I have to say since the day I was diagnosed (I was 14years old) I was in denial about most of what was going on with me. I was invited to kidneykidsnz – an organisation that helps and supports families and children with kidney disease and failure- and I didn’t attend anything. I was scared to meet people like myself mostly because I […]

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With great “power” comes great “responsibility”

The day that I left Auckland hospital things began to immediately feel very different. I was given strict instructions: Drink roughly 3 litres of fluid (mostly water) everyday Be at Auckland Hospital everyday at 7am for daily visits to the kidney outpatient clinic Complete daily blood tests (roughly 10 tubes at the start) Become familiar with the smorgasbord of immunosuppressant tablets- that are to be taken at specific times (never missed) The day that I was discharged came at a shock to me. Like this entire process my body has […]

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DAY THREE/FOUR: This Kidney does not & will not belong to me

  Day Three: 27th July 2017 They took away the pain pump. What the actual fuck. Later on… Ive been introduced to Oxycodon. We are back… I remember this day probably more than the others only because it was discovered that during the first day of surgery a vein of mine had blown so the line they were using to put in pain relief was working but couldn’t be used anymore and it was the pain team’s decision to see how I could manage without it. Funnily enough, I […]

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Transplant Recipient: My first four days of freedom

 I got a taste of freedom, it tasted like a lot of morphine, viles of fentanyl and a whole lot of energy. Guess it is my turn to tell you a little about my amazingly short four days in hospital walking in with two peanut shaped dead kidneys and walking away with three kidneys.  I won’t lie, Leah writes better than me and has a far better recollection of what happened. I’ve been hiding from writing because I’m still in disbelief any of this really happened. My name is Denny, and […]

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