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.