Not another pill!! — Refracting Hope

Bleary eyed, I leap off the lounge, responsive to my iPhone’s aggravating ping.

The 1st today, a reminder to swallow pills 1-4 of 14.

14 pills a day, is what I take.

Like a roar from my long-gone father, the command from my iPhone requires instant obedience, else my mind veers off like a child running to hide, who, inevitably found, suffers. In this case, stomach pain and nausea if I take the “30 minutes before food” tablet with food, possible seizures if I forget to take pills 3 & 4, and ??? if I fail to take 1. Like a slow response to my father’s orders, tardy drug compliance ends poorly.

Stabbing a knife into the relevant webster pack capsule, levering out Pill 1 (the new one, taken for the first ever time), I weigh it in my hand, all 9mg of it.

Fear is deceptively light.

First, I stress about the potential side effects; **my mind creatively describing my future with Pill 1, semi based on its consumer information leaflet:**

will this drug interact with the other 13, leading to instant paralysis or blindness, leaving me dependent, for the second time in my life, on a carer who may/may not harm me? I study the list of “drugs-which-should-not-be-taken-with-this-drug”, looking for potential clashes.
will I become drowsy like “fatigue” implies? Like my teenage self, drugged up on psychiatric and sedative medication, reflexes dulled, unable to get away from him? Versed from childhood, I know that Groggy = unsafe.
A 1/10 000 chance of pancreatitis? I focus on the 1, ignoring the pancreas-healthy 9999 (my luck historically skewed towards bad).
will I drop dead from an incredibly rare allergic reaction I wonder, as an ancient thought runs through my brain: will he accidently smother me today? Nervously, I scrutinise every ingredient, comparing them to my known drug allergies.

Already late to take pills 1-4, heart speeding up, my mind babbles on…and on…

The most common side effect of every drug is my terror of adverse side effects.

Rather than see pills as beneficial, **in a crazy replication of childhood, I humanise them, perceiving them as threats.**

So, bent on survival, I attempt to outsmart Pill 1, just as I spent so much time as a teen working out how to survive his random attacks.

Unlocking the front door, I sit (with iPhone, pill and glass of water), just inside it, allowing paramedics easy access if they bother trying to save me from an anaphylactic reaction. Saving my life is their job, but I remember extended family and teachers witness what was happening to child/teen-me (parts of it anyhow), turn away. Even though it was their ‘job’ to save me.

Therefore, it’s a looong, fearful 15 minutes of waiting for unconsciousness after swallowing that pill, before I uncurl myself from the floor, like a child emerging from a wardrobe after the footsteps have passed.

Now that it’s obvious I’ve survived Pill 1, Dose 1, **I begin to consider what this chemical demon might do to my body over time.**

Stuck on the danger theme, I skip over therapeutic benefits as I re-read the information leaflet, which lists every body part which could be slowly murdered by this drug. It’s like a warped version of self-harm: By taking this pill I’m risking organ failure to possibly save myself from disease complications. Each dose seems like a desperate slash too near my wrist - my teenage self’s attempt to relieve psychological pain, with the same unguaranteed benefits.

Back in the kitchen, I eye my Webster-pack.

I tremble at the sheer number of pills it contains – seemingly bucket loads, a reminder of the loneliness of suicide attempts; overdoses which I survived, semi wanting to die, ending up in hospital, semi-glad I’d lived.

Hyperalert and scattered, my risk of accidental overdose rises commensurate with the amount of medication and the complexity of its regime.

The webster pack reduces this risk, but a residual link between pills and death or hours/days/weeks/months trapped in hospital remains.

Dying alone or being trapped. These pills symbolise two of my lifelong greatest fears.

Among other things…

Grimly, I gaze at Pills 5-8, the enormous purple ones.

Later today I will wrench them out of the pack, each one the shape and size of the vitamin tablets child-me was forced to gulp down with a glass of juice at breakfast, each manually shoved down my throat if I refused to take them.

I can refuse treatment now, without the risk of aggressive shoving fingers. But the words that came with them were poked into my mind: “Take your tablets. It’s for your own good” (a statement punctuated in 2022 by their bitter taste whenever they get stuck in my throat on the way down).

Some consider medication compliance as an act of self-love. I, focusing on the awfulness of the side-effects, see it as “cruel to be kind”, another phrase I knew well as a child.

Pain inflicted in the guise of love is terrifying.

Pill 9 **is a rock thrown from childhood, its claims of symptom relief an echo of *his* promises:**

“if you xxx you will get xxx”. “Life will get better, if you xxx”, “if you leave home, you will NEVER survive without me”.

My future is still as hazy and uncertain as the one he created:

what will the diseases do next? (what will his next move be?). The side effects are miserable, but the medications work, mostly (he hurts me, but does nice things for me, sometimes). Is it better to live with the side effects/risk of medication or refuse treatment, chancing disease complications? (is it better to live with him or be out in the world alone)?

I take the pill, fearing the consequences.

In this case, it’s better the devil you know.

The opposite of my response to him.

Pill 10 **is an uncanny lookalike of my 94-year-old friend’s blood pressure tablet, taken twice a day with meals.**

My complex pill regime divides my day strictly into 6, a fact incomprehensible to…everyone.

For instance, I’m used to my friends’ snoring/snorting noises when I say that, limited by my “take 30 minutes before meals”, and “1hr before or 3hrs after food” pills, I cannot impulsively eat out. And I’m used to them ignoring me as they slurp, gobble and gossip, whilst I try to keep up with the conversation, distracted by the food smells.

I am different. Just like as a teenager I was different from my classmates, in ways they couldn’t understand, didn’t ask about, and probably wouldn’t have believed. It’s easier to ignore the pain of another.

Pill 11, **the immunosuppressant one, maddeningly adds cuts, scrapes and the common cold to my pre-existing fears of assault, fire and assorted other things.**

Pills 12-14 are boring repeats of 2 and 9, giving my day a deja vu type feeling.

And today I don’t need Pill 15 (the “take when needed” one.

Which is excellent! Because, non-PBS, it’s a $300+/year extra to my $244.80/year PBS safety net threshold, thus symbolising debt, past and present.

Finally, scrutinising my webster pack, gulping down Pills 2-4, I’m done.

But only briefly, because like the gap between the roars which sandwiched his afternoon nap, my medication reprieves come in 1/2-4hr blocks.

Medication seizes each day, my world shrinking with each additional drug, so that it feels the size of whichever happens to be my smallest pill at the time.

When I planned my life, this wasn’t in the plan.

So, as my world deflates, my angry grief balloons, choking me until those pills, coated in loss, are even harder to swallow:

Constricted by dosage timing, I’ve lost spontaneity.

Riddled with a (seemingly limitless!) number of illnesses, I’ve lost a life without disease symptoms and medication side effects, and gained an existence full of the daily difficulties they bring.

Add in the diet and lifestyle changes which accessorise the drugs (add this, avoid that, do do, don’t do), and frustrated into fury, life becomes splattered with childhood resentment and grief (I’ve chucked your books in the bin because you were told not to read, get rid of that dog or I’ll shoot it just like I shot your cat, you’re not playing, there’s work to do…and when you’ve finished that…).

Do I want another pill? Not really. My medication is a grindingly relentless all-day in-my-face reminder that I’m childishly weak again, no longer fit or strong, forever unable to do what others can do.

These are losses of myself, unreturnable, permanent.

And vocal:

*Nothing will ever change, things will only get worse, I will never escape. The future is bleak.*

A narrative of suffering begun another lifetime ago, by a little child.

She was wrong though, I realise (sometimes).

Living is still hard, but in 2022 the future is less grim, more hopeful, immensely larger than before. Something she couldn’t foresee.

And, caught up in grief, anger and fear, deep in my ‘I-hate-drugs-and-everything-they-represent’ slump, it is teeth-grindingly irritating to admit that, despite how hard it is to take them, I am grateful for these medications which (generally) control my diseases, allowing me to function better than I might do if I never took them.

She looked weak, but she was mighty strong, that child (deep inside where it matters). And although bashed around by PTSD and disease, I’m still resilient.

Down but not out.

That’s what I am.

It’s just that my strength falters at times.

So this morning, wistful, I must restrain my finger from deleting my demanding iPhone medication reminders.

Pill free, even for half a day. Without negative consequences!

Wouldn’t that be nice.