Honestly, I'm not sure

June truly did bring Summer for us and many others, didn’t it? For me, the highlight was the almighty storm we had about a week ago. I stood in our front garden and listened to it roll in from the south west, no break in the rumbling, and then it was here. Gale-strength wind, sideways rain, thunder and lightning. The way the heat and humidity broke - albeit temporarily - was wonderful, as was the perspective brought by the audio-visual sense of huge elemental movement happening over our relatively tiny heads.

“The Weather” was definitely the theme for this month in our corner of the west of England, and we even took to watching the Met Office channel. Of course, even those educated people can’t always be accurate with their forecasts because nothing says “uncertain” quite like British weather.

That there, at the end of the paragraph, is a slick segue into what I thought I’d write about this month…uncertainty.

Bertrand Russell once wrote: “The demand for certainty is one which is natural to man, but is nevertheless an intellectual vice.”

He went on to add: “To endure uncertainty is difficult, but so are most of the other virtues.”

I’m finding that expanding my own capacity for uncertainty is one of the best things I’ve done for myself in a long time.

Most of us cling to the idea that there is always a right answer or a right way, and should we work/think/meditate/exist well enough or hard enough, we’ll find it. Then we can be certain. Sure. Secure. Safe. We will have arrived at the destination and we can stop worrying.

So, certainty can become a goal, and our brains - the on-board computers programmed to hold us in the predictable, the repeatable, and the reliable - support that goal, setting up sirens and flashing lights and jump-scares if we wander too close to (shudder) The Unknown.

Luckily for me, I’m just usually right. Being the eldest of five will do that to you; it’s in the job description. Unluckily for me, the reality is, I simply had a deep-rooted attachment to knowing All The Things For Sure. Note the past tense.

I’ve told these stories many times before but, for context, the first five years of the 2020s went like this for me:

Xmas 2019: my young dog dies suddenly (euthanasia), at midnight, due to an undiagnosed brain tumour.

March 2020: the first UK covid lockdown, and all that the following months entailed for the world.

October 2020: I find my elderly father in a state of collapse. He will need care, luckily at his home, for the rest of his life.

January 2021: he has an aortic valve replacement and develops delirium.

March 2021: on his 86th birthday, in a crappy care home for “rehab”, where we can’t visit, he develops covid. Being him, he shows no symptoms but gets pushed from home to hospital to home until he finally gets back to his own, near me, in June. We find, after many false starts, a live-in carer who, with my daily help, keeps him comfortable and cared for. The delirium has fast-tracked his vascular dementia; Parkinsonism is fast taking his ability to walk, and he is in late stage heart failure. His health degenerates and he has no idea where he is or who he’s with, until finally…

October 2022:...he passes away, aged 87.

Nov/Dec/Jan 2022/3: we clear out his large house (he was a neurodivergent hoarder of everything he ever owned) and attempt to sell it as the market crashes. I am diagnosed with spinal arthritis.

March 2023: my 16 year old dog has to have treatment on his eye which involves drops three times a day and horrible “scrapes”. It gets worse. Ultimately, we have to remove the eye. It turns out it had been his “good one” and he is now blind. And he must have been lip-reading because he can’t hear me either. He is plunged into isolation and both our hearts break.

Also March 2023: I develop severe stomach ache and can’t lift my right leg. Over three weeks, three GPs tell me it’s wind; it’s my hormones; it’s a mystery. I demand a referral to the hospital where they scan me and see that my appendix perforated three weeks ago and only my body’s ability to create an infected ulcer over the hole has saved me. I’m admitted to hospital for three days on IV antibiotics and daily scans because it’s so messy in there that they daren’t operate. I’m sent home with my appendix still on board, and a wheelbarrow full of antibiotics. We will have to “wait and see”.

April and May 2023: more scans and a failed colonoscopy (don’t ask, my body is unusual okay?).

June 2023: my dog can’t take anymore and I can’t put him through anymore. We say goodbye in his favourite sunny spot in our back garden. The sun goes in.

Summer 2023: my partner (now husband), Charlie loses hearing in one ear and is diagnosed with an acoustic neuroma (a tumour on the auditory nerve). Meanwhile I’m in ongoing tests and waiting and seeing and feeling like a timebomb until…

September 2023: my appendix has fixed itself and I am astounded at our bodies.

I find myself having multiple anxiety attacks on the daily. When it gets to the stage where I can’t drive, or really function properly, I start taking an SSRI which stops them. Immediately. Reading up on health anxiety, I see it described as a reaction to uncertainty and instantly know that’s exactly right, for me. However…

Jan 2024: my GP decides that I definitely have breast cancer and sends me home with a fast track referral and a bunch of leaflets that I put in the bin. I know what it is and it isn’t cancer. But we do the tests and, oh look, wait and see. Spoiler: it’s fine.

We’re still waiting to hear about what happens with the pesky ear tumour and Charlie develops chest pain. The same GPs that missed my appendicitis tell him it’s acid reflux.

April 2024: The last of my beloved three dogs goes to the big sleep. She was so very tired. We are so very sad.

Charlie flies to South Korea to spend time with his brother and SIL. He has a horrible time due to the fact he keeps collapsing with acid reflux. I pick him up from Heathrow and he’s literally grey and sweating. This is angina, I say.

May 2024: we get married, after 23 years. It’s a lovely day. A week later, acid reflux makes me call an ambulance. The paramedics tell him it’s stress and I ask them to take him to the hospital. It’s unstable angina and he has a stent fitted two days later.

We spend the summer with Charlie rehabbing and the three of us just being immensely grateful. I am not coming off those SSRIs any time soon. All is sort of well (please bear in mind that I am not revealing anything that relates to our daughter except to say that her mental health was pretty much shredded by this period, during which she took and passed six GCSEs, was diagnosed with ADHD, and achieved a High Merit in an extended Level 3 Diploma at college).

September 2024: Charlie has gamma ray treatment on the ear tumour. This involves having a frame screwed to your skull so that you can’t move during treatment. If it works, the thing shrivels. If it doesn’t, high risk surgery is the only option. Guess what…we wait and see. Spoiler: we hear a year later that it shrivelled.

December 2024, four days before Christmas: Charlie comes back early from a walk and says he feels unwell. I drive him straight to the hospital where they tell him he’s about to have a heart attack and he can’t go home. He’s freaking out because he HATES hospitals. The next day they say he needs a double bypass and will have to stay in hospital for a month where they can keep him safe while he climbs the walls and the waiting list.

Christmas Day: Daughter and I have flu and are bedridden.

December 30, 2024: Charlie has a major angina attack and they blue-light him to Bristol where he has a triple bypass. Three days in ICU (he had to be re-opened again after they wired his chest shut, and it all got a bit iffy), five days of wait and see on the cardiac ward and they send him home to me. I, you may remember, am not a nurse. He is not in the best of shapes and requires total bedrest for some time.

To wrap up, 2025 saw Charlie knock rehab out of the park. It will never be as if it didn’t happen, and we never forget or take anything for granted. I get more arthritis diagnoses - hands, feet and neck - but by September last year, I’m finding moments to learn from all this. I start to taper off the SSRIs and by January this year, I’m off. As anyone who has done this will tell you, the first few weeks without additional serotonin availability is a trip, but I’d done it before and I’m cool.

April 2026: my migraine (average number of attacks/flares a month: 4-6) starts to escalate. By mid-April I’m at 20 days a month and not really functional. I also develop issues of a gynaecological nature. Here comes another fast track referral - this time for ovarian/uterine cancer, biopsy, and wait and see. Spoiler again: it’s fine. I am actually one of the luckiest people I know. GPs are not good at root cause, but they are good at sticking a band aid and a referral on individual symptoms so I don’t complain too much and instead take matters into my own hands. I’m down to about 10-12 days a month of migraine (which honestly feels like freedom), with no other symptoms bar the arthritis, and a plan to improve it further.

Can you see why I had such a dysfunctional relationship to uncertainty? And please, I know this diary of doom is not special or even unusual. When they say everyone is fighting their own private battle, they are speaking truth. I see you, I do. I am not writing this for sympathy - I know you’re all lovely people and we all support each other with the ol’ long distance vibes - I just wanted to tell the story of a personal descent into profound uncertainty. Because if I can come to terms with that, learn from it, and ultimately embrace it, then almost anyone can, I promise. I also appreciate that so many of our health issues have so far had very positive outcomes. We are beyond lucky and we know it. How much easier is it to embrace uncertainty in those circumstances?

I’m currently reading Sarah Wilson’s latest book, I Eat The Stars, and bending ears about it every day. She subtitles it, “how to live fully and beautifully in a collapsing world” and she could have written it for me. It’s exactly what I needed to read, written in exactly the way I needed to read it. I cannot recommend it enough.

In a chapter titled, ooh look, “Uncertainty”, she writes:

“Neuroscientists have now found that allostasis, or psychological stability through change, as opposed to homeostasis, is our healthiest baseline. Homeostasis says healthy systems should return to the same starting point following a change: X to Y to X. With allostasis, healthy systems also crave stability after a change, but the baseline of that stability can be somewhere new. So you can have: X to Y to Z. Their studies show that the brain is at its best when it is constantly rewiring itself and making new connections - dealing in exciting new directions. You know, dancing with life as it’s happening?”

I do know that any kind of inner process like this will exist in a state of flux. Good days and bad days. Good years and bad years. And personal loss will always throw us off our feet regardless of how safe we feel. It’s taken me many decades to get here, and the lessons were tough, but I think I’m ready to dance.

And not for nothing…anyone else thinking that ADHD might be on to something?

Until next month,

Jo
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