When a person who’s known you for longer than the duration of your son’s recently completed cancer treatment tells you that they “know you won’t ring the police” after quizzing you about which neighbours might be able to see into their garden, when they mention that someone has “just” had a baby & some of the “girls” are really “struggling” & then they go on to tell you that they just want to have a few of them over for drinks in lockdown, you almost look over your shoulder to see if the conversation is being directed at someone else. Then you realise it’s you…the cancer mum, being made to feel uneasy for all of the reasons & more that I spelled out in my last blog post (Covid Diaries. First Imagine This.).
To prevent yourself unraveling on the spot you find yourself trying to displace your intense discomfort by mentioning that perhaps you’re “probably not the best person to talk to about breaking lockdown” in the vain hope that some sort of conscience might kick in.
You marvel at the irony that in order to try to keep the peace you find yourself going against everything within you by suggesting that if the intention is to break lockdown then perhaps it might be an idea to sit in plain sight, arrange chairs 2 metres apart & tell everyone to bring their own drinks. You make that suggestion because in those split seconds that you feel like you’re being played, you think the easiest option is to let that one event go over your head, since your blood pressure is rising as is the hurt caused by the obvious lack of compassion. You’re reeling, because after everything you’ve been through over the past 3.5 years someone who knows you thinks it’s appropriate to look you in the eye & engage you in this lockdown charade.
Drinks for the girls takes place & then moves into the back garden, you let it go because the painful confusion is too much to explore & you put it down as the “one off” you believed it to be.
The days progress & you feel emotionally abused as the lockdown gatherings continue. You consider the conversation you were undeservingly drawn into & realise it was an opening gambit.
You start to question the societal worth of your child & everything he represents. You question why your child isn’t enough; why cancer isn’t deemed important enough to respect in a global pandemic. You question whether anyone has heard you for the last 3.5 years & you question who you can trust. You question what it is about you that makes someone feel it’s ok to put you in this situation; you question what on earth you’ve done wrong & you’re overwhelmed with self-doubt.
Then one day another person who knows your situation asks how your vulnerable child is & you reply that they’re really struggling because they still have their port in & it’s causing a lot of anxiety. Your response is swiftly followed by the statement that their friend’s child had leukaemia & that you should “prepare” yourself for when the port’s removed because that’s when “it will really hit you”. Shortly afterward, your vulnerable child sees the offspring of the leukaemia authority happily playing in the garden with their friend & he asks you if lockdown is over.
It’s at that point you start questioning your sanity; it’s at that point it really starts to hurt like hell.
Others are asking how you’re doing because they keep seeing anomalies & “hearing gatherings” & are concerned as to how you’re all coping with it.
You send a message to the “neighbourhood” WhatsApp group which ironically at the beginning of lockdown included the statement that we are blessed “to have a great neighbourhood”, that “we can help each other” & that “it’s heartbreaking that you’ve just finished treatment & now need to deal with this…Be safe all”.
Sharing the anonymous message causes someone to call out for all to hear, at your family over the garden fence because they seemingly didn’t like one of the responses to what was in essence, their own conduct; it was suggested that we “should’ve had a word” if we weren’t happy.
The irony in the indirect confession & lack of self-reflection makes you chuckle but the hurt being caused to you & other surrounding shielders grows.
You kick yourself for naively believing that the only thing you’d been hoodwinked into turning a blind eye to was a small birthday celebration (whilst trying not to be eaten up by the memories of your child celebrating their 7th, 8th & 9th birthdays having chemotherapy & week-long doses of steroids).
You now struggle to entice your vulnerable child into the garden because they’re just plain scared, but when you hear a group of children singing happy birthday whilst you’re lying in your hammock in the middle of the day you’re kind of glad your child has stayed indoors.
The neighbourhood listens to yet another open-air evening of partying & you question whether you should say anything but experience tells you that you’re damned if you do & damned if you don’t.
The audacity that ensues becomes almost comical; posts about family birthday parties are deleted & ironically replaced with posts that suggest some sort of mindful respect to “let everyone deal with lockdown easing at their own pace”.
The gaslighting continues when you discover the rubbish from the lockdown entertainment overflowing from your own dustbin & because the lid couldn’t be shut the binmen didn’t empty it so you have to go a fortnight with little space to dispose of your own household waste.
The disbelief gains even more momentum when those in proximity are treated to a pointedly audible conversation with the police due to an attempted break-in & the neighbours are described as the kind of people who don’t call when the burglar alarm goes off (despite the very real fact that you’ve selflessly spent countless times over the course of god-knows-how-long calling the homeowners & leaving your sick child on the sofa to turn the alarm off)…
I write this not just in recognition of my own family but for all of the vulnerable people who’ve contacted me with similar experiences having been torturously let down by people they thought genuinely cared; it’s disheartening.
So, for the shielding families who
• had to keep their vulnerable child away from their garden fence because the neighbours kids kept hanging over it
• got ghosted for calling out the “friend” who worked in a care home (where there were several Covid deaths) & would show up unannounced in their work clothes
• lost respite & carers help & we’re left to fend for themselves
• couldn’t use their small garden because the neighbours kept inviting people over to have jacuzzi parties
• felt let down by their own family members
• thought friendship equated to respect & if nothing else a modicum of subtlety
• have been taken advantage of publicly & then unapologetically shunned
• have been deeply hurt by the fragility & privilege of the healthy
• have spent years listening to people tell them that they “don’t know how you do it” only to find themselves having to “do” even more because of another’s actions
• look like they’re coping which seems to signify some sort of extra special skill set which means you’re “strong” & can cope with anything
• have had to find an answer when their vulnerable child asks “so they don’t really care about us then?”
• have vulnerable teenagers that can’t go to university & are enduring unspoken anger & anxiety
• no longer need to shield anymore because their vulnerable loved one has now passed away
You’re not alone even though it often feels as though you are.
Don’t let yourselves become invisible, despite the fact that the government & many others have basically made you feel that way.
Rest in the knowledge that you won’t get an apology because some would rather try to deny & excuse the facts of your lived experience, don’t allow their attempts to make you feel small affect you; shout even louder because the chances are those people are already living a lie.
We all know that everyone is struggling through this pandemic. It doesn’t take many to make you feel irrelevant & it only takes the actions of a few to question who you can really trust but it’s imperative to remember those who truly care especially when you’re having to rely on the rest of society to increase your loved one’s chances of survival.
Only the shameless would choose to dismiss your very real fears & many would rather marginalised groups sit quietly in the corner & just deal with constant microaggressions.
What does that say about the attitude towards those in vulnerable situations?
You may not have been given the attention you needed, but you have gained respect where others have lost it. Vulnerability is a strength; a sign of resilience where others fail.
I’ve never felt such worthlessness in my life & it’s taken me weeks to unravel this hurt but I’m not going to sit small & be treated with contempt for the wrongdoings of others.
Vulnerable people are not low hanging fruit, they are not easy pickings. None of them have the levels of amnesia some of the mindless are relying on; they won’t ever forget this additional pain.
Remind yourselves that you don’t owe anyone anything, those who opt to help vulnerable families without considering how to actually walk the walk should rethink their reasons for helping. Remind yourselves that helping others should never come with a set of conditions.
Charity is not currency.
Perhaps I should’ve done what it seems others in the neighbourhood have done, perhaps I should’ve called the police. I blame myself for that.
Then I look at it again & I’ll forever wonder why, as a mother of a child who’s just finished cancer treatment, it was deemed acceptable to ever have been put in this position in the first place. I will forever wonder why some felt it was deemed appropriate to flaunt their disregard so flagrantly in such close proximity to a family who are still wading through the depths of hell.
And whilst I will forever wonder why we were considered unimportant enough to be put in this preposterous situation or why so much of society is so openly disrespected, I will also continuously remind myself that to the majority, vulnerable people across society are some of the most heroic & inspirational people that many of us will ever have the honour of knowing.