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My End of Life Document: What Covid Means for the Chronically Ill

By 29th September 2021Life, Think About This

Writing by Fenella // photograph by Marta Golova

At 46 years of age I never imagined I would be having to create an end of life document. We often think we are invincible for the most part. But this is where I am at. My training as and End of Life Doula, that I finished just prior to covid, has at least come in handy for that. My main feeling apart from sadness is one of intense anger. Anger at the fact that I live in a society that seems to think that those of us with ‘pre-existing conditions’ are somehow disposable, collateral damage in our race to “get back to normal”.

I cannot and will never be able to get a covid vaccine. In 2010 I faced my own mortality for the first time as my body was wracked with not one, but three hospital introduced infections after major surgery. On that occasion I spent 5 months dancing with the devil and lived to tell the tale. As a result, my immune system has been changed at a cellular level and the last time I had the flu shot I suffered an anaphylactic reaction. Not from the ingredients in the vaccine, but from my body’s catastrophic immune response 12 hours later. I was told way back then that I could never have a flu injection again, and now the same applies to the covid vaccine.

I’m having to consider what my life as an unvaccinated person will look like. One option is to never leave my flat again, but let’s face it, we’ve all been in lockdown for 220+ days now and it’s not much fun. It’s also not realistic to expect a person to stop having a life and doing the things they love. I work as a trauma therapist, so a lot of my work is client facing. Thankfully I’ve been able to transition to zoom sessions during lockdown, but trauma work is better done face to face, and I would like to get back to seeing my clients in person at some point. I can’t afford to give up work, I have a mortgage and bills to pay and even if I didn’t, I love what I do and I’m not ready to give that up.

It’s going to be very different to what it was pre covid. No large indoor gatherings, no more gigs, no more football games with my father, no more big family get togethers (unless they’re outdoors). I haven’t seen my 94 year old nanna in months, but even if I do get to see her again, I will not be able to hug her. Everything is a possible mine field, and just thinking about it all makes me want to crawl into a little hole and pull a weighted blanket over my head.

But I can’t afford to do that as our state marches towards opening up. So, I sit in front of my PC in my little flat, writing out instructions on how to take care of the cats. The bengal needs walking every day, the non bengal is on twice daily thyroid meds. I have so many plants, what will become of them? How will those I love cope if I die? I certainly fell apart after my mum’s death when she was just 44. It’s all so overwhelming.

I must go and see my GP and get my medical exemption, while I’m there I will sit with them and write an advance care directive, just in case. I need to update my will – I should probably do powers of attorney too and a Do Not Resuscitate Form. I’ve registered as an organ donor, so at least that one is done. I’ve already written about what I want to happen with my body when I die and what my funeral should look like, that one I completed when I did my training.

I have let my clients know that I can only see them face to face if they are vaccinated, knowing that this in itself is not a 100% guarantee. But nothing is, right?

I rely on herd immunity – on others doing the right thing. And every single day I see awful examples of what this world has become. Anti-vaccination, anti-mask and anti-lockdown protests. The politicisation of a public health issue – every person for themselves and f*ck the weak, the old and those with pre-existing conditions.

I’ve spent months and months in the hospital system, back in the day when it was not stretched to breaking point by covid. I struggle to comprehend how the system will be able to cope at all now. Our health system barely recognises any illness that is outside the box. Chronic fatigue? Fibromyalgia? All in your head. Now we’ve got the very real long covid and from what I’m seeing, it’s just as bad, if not a whole lot worse than some chronic illnesses which just means more people to get left behind or gaslit.

I’ve got plans, I’ve got hopes and dreams just like everyone else. I’m still young and have so much do to. But the future now terrifies me.

Fenella

Fenella is a trauma therapist based in Naarm/Melbourne who loves taking photos in her spare time. Avid tea drinker and slave to two cats, one of whom she must take on daily leashed walks. Old skool raver who still loves to immerse themselves in electronic music and has fully embraced their witchy self as they have gotten older.

Follow Fenella Instagram.

Marta Golova

Marta Golova is a first generation Ukrainian-Canadian photographer currently based in Toronto. You can follow Marta on Instagram @martagolova

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