Why I need to stockpile to lead a "normal" life
By Kiana Kalantar-Hormozi // 大象传媒 The Social contributor
I stockpile – I stockpile all the time. At the start of this year when it was three for the price of one on one of my favourite toners, Manuka honey when there’s 70% off (because I seriously go through a lot of honey jars) and I also stockpile hand gels. I actually need them in my daily life, and that’s before the Covid-19 crisis kicked in.
Before Covid-19, I had a normal life – my definition of normal, but maybe not yours. I had a part-time job, was working and collaborating on various creative projects and socialising with friends (because humans are social animals and I’m no exception).
Now, I only have the first thing on that list… and a serious risk of running out of toilet paper on top of all that.
SMA (Spinal Muscle Atrophy)
Kiana has type 2 SMA. SMA is muscle weakness and it means that Kiana needs a wheelchair to get from A to B and support to facilitate independent living. SMA makes it more difficult to move, eat and even breathe. There is no cure for SMA at the moment.
Regardless of Kiana's physical ability, she believes she can do anything she puts her mind to (except tidy her room).
See, around ten days ago, I made the decision it was no longer safe to continue living my life as “normal” because I did not, and do not, have enough information on how Covid-19 could affect me. Countries are going into lockdown, health services are overwhelmed and I keep hearing the phrase “sadly older people and those with underlying health conditions are more at risk” which to me sounds a bit like, you’re disabled, you’re going to die and we don’t care enough to try.
I’m constantly at risk - I nearly died at the age of two from a chest infection. I’ve nearly died a lot more times, I’m pretty sure more than Harry Potter in fact. I don’t need more risk, specifically not a potentially deadly virus attacking my already weak respiratory system (and may I point out, that’s why even in “normal times” I stockpile on tissues because I need to clear my lungs every day, sometimes several times, and sometimes I get lazy and miss a day… but that’s not the point here).
I use tissues, handgel and proper hygiene in my daily life and that’s why I CAN have a high quality of life, a “normal” life. It’s confusing to me that everyone is suddenly treating proper hand washing technique as a patriotic act. Where have people been the past few years and why is this new?
What Is SMA (Spinal Muscle Atrophy)?
Kiana, who has type 2 SMA, explains what the genetic condition means.
I have had to fight people - ordinary everyday people AND medical professionals - because I am (and this is a term the medical professionals use) “an expert patient”. I have Spinal Muscular Atrophy Type 2 which is considered a rare health condition, which in reality is not all that rare since its most severe form Type 1 was the biggest genetic killer of infants in the UK.
I say “was” because innovative, ground breaking, life-changing and criminally expensive treatments have been popping up since December 2016. I have not yet, after years of campaigning, sweating and pushing, had access to these treatments. But it might happen (darn that “might”).
It’s on the horizon for me. Light at the end of the tunnel, I can see a slither of it. I don’t want the news headline to be “Woman on the verge of receiving breakthrough medical treatment dies from Covid-19”. I’d rather read “Woman receiving breakthrough medical treatment gets eaten by shark while swimming in the Caribbean”.
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I want to take my chances with the sharks and not Covid-19. So I HAVE to stay at home, cancel all my plans, go a little bit crazy with cabin fever and continue to stockpile AS USUAL because yes, I need to stockpile to an extent to live my life. It is not practical for me to go out every day, or even every couple of days, to buy essentials.
I need to stockpile to an extent to live my life.
A taxi journey to the supermarket and back would cost £30-40. True, delivery costs less but I still sometimes need to check, see and then decide if I want to buy, like everyone else. Even if I don’t need to, it’s a privilege I want to, and should, have. The support that I get to live my life is still so incredibly limited and fragile that I just cannot waste an extra hour or two heading to buy a new pack of toilet roll every day – I’ve got bigger plans than that.
So let’s add all this up. I’ve got health issues, a new deadly virus on the loose and limited time, money and energy. On top of that, all of these issues are squared because society as a whole is exhausted and confused due to Covid-19. I need to stockpile just a little bit more than usual because I don’t have many other options. In truth, hand gel is not that high up on my list. Give me some fresh food, Manuka honey and matcha tea – I’m going into cave girl mode till this all calms down.
