Deciding To Hope

To hope or not to hope?

In one week my immediate family and I are leaving for a holiday on Heron Island. That was a difficult sentence to commit to. Not the sentence, just one word.

‘Are’

The certainty inherent in those three letters. Articulating it feels like I am going to jinx it, like I will alter the course of history, even though I know that’s impossible.

This is our third attempt at this holiday. The first was over Easter 2021. I almost needn’t follow that up with any explanation. To use a recently much reworked cliché -everyone was in the same boat…or in our case not in the boat bound for our holiday destination.

It was a time of global holiday cancellations. We were all still invigorated by the adrenaline of the early days of a pandemic many believed could be conquered and left behind.

We rebooked our holiday for Easter this year. But in a twist of acutely painful timing our city was locked down. Ironically only for 3 days. But they were the exact 3 days we were meant to travel to Heron Island.

By the time that little lockdown ended, everyone else was off to enjoy their Easter camping trips. We were left feeling slapped, as though we had been singled out by the universe to miss out on our holiday.

But we rebooked again. For next week. Knowing it might not eventuate this time either.

And about three weeks ago doom crept into the family. We began to censor ourselves and each other. Snapping ‘If it happens!’ if anyone dared mention anything to do with the holiday. We shot each other down with sarcasm and repressed feelings as though expressing any plans, hope or joy associated with this holiday would save us the disappointment if it had to be cancelled again.

So, just under three weeks ago our family decided – that instead of clenching everything, and white knuckling it through this will-we-wont-we time, we would allow ourselves to feel the joyful anticipation of this holiday.

We began to talk about what snacks we’d take on the car trip. What we were looking forward to most. We wondered if we would see clown fish. We started making packing lists.

Don’t misunderstand me. This is not about mindlessly Pollyanna-ing the reality we live in. All four of us are abundantly aware that things can look like they are going ahead one day only to have them snatched away in a minute.

While it is true that right now we have no control over whether our holidays or special events will be cancelled at the last minute – it is also true that we never did, we just weren’t as acutely aware of it.

But we can choose how we feel in the lead up to planned events. We can choose to anticipate disappointment or anticipate joy. Whether it ends up being disappointment or joy is almost irrelevant because it isn’t about the eventual outcome. It is about how we feel right now.

We can choose to scrunch ourselves into a ball of anxious negativity. But for what? Being able to say ‘See I told you it would be cancelled’ if it is cancelled? Like a sort of sick Schadenfreude directed at ourselves.

Or we can choose a more relaxed, positive attitude that coexists with the knowledge that it may be cancelled, but that the anticipation is pleasant. If the holiday goes ahead we will have had a much nicer lead up to it, than having to spend the first few days unclenching from the negativity.

If it doesn’t happen, we’ll be disappointed, but we won’t have wrecked the preceding few weeks with dread.

Choosing to have low expectations in an attempt to avoid disappointment is not only flawed, but in these times of immense uncertainty it doesn’t serve us well. It robs us of joy. The brave thing to do is hope in the face of uncertainty regardless of whether that hope ever grows into reality.

That said, I have two disclaimers for the hope approach.

The first is that the ability to conjure hope relies on reasonable mental health. Someone experiencing symptoms of mental illness, especially those featuring depression or anxiety will no more be able to think themselves into hope than a diabetic can think their blood glucose levels into the correct range. They will need the right treatment for them before hope can become a choice again.

The second is that if you are attempting this with children, they need to be old enough/emotionally mature enough to understand that the hope does not guarantee the holiday.

For today, everyone in my family is well enough to hope that by mid next week we will get to see those clown fish and soak in the endless blues of the sky and the ocean surrounding our tiny Island destination.

You may also like to check out:

On Uncertainty

Covid Year 2: Timing Your Perspective

Razor Blades In Mud: Laziness Or Depression?

Medical Decision Making And The Wallpaper Effect

Thassos Island, Greece- Ouzo and olives at sunset -long before I had to make medical decisions for myself
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Let’s play a game.

Imagine being recommended a medication that you were told could lower your risk of dying. But to be fully informed before taking it, you were first required to spend 24 hours in a room wallpapered with all the potential risks and side effects of taking that medication printed in large, bold font.

The words all over that wallpaper are:

Dizziness, nausea, weight gain, diarrhoea, constipation, abdominal pain, vomiting, back pain, migraines, suicidality, paraesthesia, restless leg syndrome, blurred vision, ringing in the ears, eczema, itchiness, hives, agitation, irritability, nightmares, confusion, muscle pain, swelling of the face, lips, tongue, and/or throat that may cause difficulty in breathing or swallowing, impaired concentration, poor memory, hair loss, decreased thyroid function, hepatitis, liver failure, hallucinations, slurred speech, kidney failure, trouble walking, tremors, seizures, coma, death

After 24 hours you are let out of the room and presented with the medication. Would you take it?

I’ve had some experience assessing health related risk versus benefit. Professionally I’ve done it with every animal I have recommended a treatment or diagnostic test for, from the simple (routine vaccinations) to the complex (invasive surgery in a patient who is already unwell).

But perhaps my personal experience of taking psychiatric medications on and off for the last 15 years is more relevant. The above list is just a sample of the potential side effects of some of my medications. If I printed them all out, and then wall papered my house with them, I could easily torture myself into not taking any of them.

This is the wallpaper effect.

I don’t disregard any of the words on that list. I know someone who almost died as a direct result of taking one of the medications I take. I have recently been diagnosed with decreased thyroid function, very likely as a direct result of taking one of my medications, There have been other medications I have tried and had to discontinue because of side effects.

And to put the risks I am working with into perspective: Common side effects for many of these medications are considered able to affect up to 1 in 10 people, uncommon side effects may affect up to 1 in 100 people, and rare side effects – so the more serious ones in the above list – may affect up to 1 in 1000 people.

As risks go, they are not exactly tiny.

And yet I opt to religiously take these potentially life-threatening medications. Why? Because the risk of side effects (in me, at the moment) is less than the risk of my Bipolar 1 Disorder symptoms being poorly controlled.

I have a higher risk of both a poor quality of life and death from my Bipolar 1 Disorder if it is unmedicated than I do from my current medication regime. My risk of death if I do nothing to manage this illness sits between 15%-20% (including not only suicide but non intentional causes of death due to manic or psychotic symptoms, which can include increased risk taking, hypersexuality, poor judgement and delusional thinking).

Thanks to modern medicine, humans in first world countries  are confronted with death less often. It is easy to delude ourselves into thinking that death can be avoided if we ‘do our research’ and make the right choices.

Speaking of ‘research’: True research is not a google search. Neither is it being spoon-fed unsubstantiated claims on social media by someone who couldn’t make their way through one research paper if they tried, let alone the hundreds it would take to qualify what they were doing as actual research. Research is something academics, including scientists and some medical doctors, are trained to do. It is rigorous, unbiased, and a skill that takes years to learn.

I believe the choices most of us make about our health have less to do with ‘research’ and more to do with the biases our environment soaks us in.

If you see mobile morgues or dead bodies outside your window, you are more likely to want the vaccination that reduces the chances of you dying from what killed the people outside your window, even if the vaccine carries a very small risk of death.

If you don’t know anyone who has died from that same illness, but you are marinated in the announcement of a potentially fatal side effect of the vaccine every time you look at a screen, you are likely to be more reluctant to be vaccinated than someone in the first group.

The scientific risk of death due to side effect is identical in both populations but the human response is different according to which narrative is shoved into our malleable brains. The capacity to weigh true risk against benefit flies away.

And that is why I choose not to live in a house wallpapered with my medication side effects.

On Uncertainty

Covid Lockdown In A Psychiatric Hospital