What happens when you *DON'T* die?

Hello Dearest Mortals

LV here in the Portal today with some trigger warnings: today’s post will discuss my experience of being extremely ill in hospital a year ago. I will talk about medical procedures, pain, fear and PTSD. I will also share some photos from that time. So if that will be triggering or upsetting for you, please feel free to skip this edition. Or if you don’t want to scroll and read with your eyes you can listen to the audio version above.

P.s. I’m using / bastardising headings taken from 80s and 90s film titles to structure this post, as it’s stressful subject matter for me, and in times of stress I fall back on the world of cinema to give me safety and separation. So read on for my personal experience of not-dying.

It feels like a storm has been brewing inside my brain and body these past few months, and I realised that last week was the confluence of a number of medical maladies.

It is one week since receiving my formal ADHD diagnosis, which is something I already knew applied to me but the finality of the assessment left me unexpectedly reeling.

It is 10 years since I was in hospital to have major surgery on a non cancerous tumour at The Christie in Manchester. I was in such a state of distress that they couldn’t operate and I went home.

It is one year since I was admitted to Macclesfield General with ‘acute and severe’ pancreatitis. And that’s the bugger that nearly finished me off. So I want to revisit what it’s like to almost die, and then NOT.

It was a Friday morning in late September 2024 when I realised something was very badly wrong. I had been struggling with what felt like severe indigestion for a couple of nights but it had subsided during the day. I’d had a steady onset of the most severe pain that morning. I tried to ‘walk it off’ (lol, so British) and only just made it back to the house to request an urgent visit to A&E. My partner James drove me while I groaned and gripped the dashboard with white knuckles. The pain was 10 out of 10 bad. The most intense and uncomfortable pain I have ever experienced and, for context, I have slayed two vaginal births and once (unrelated to childbirth)I bit completely through my tongue. Those things were painful. This was SOMETHING ELSE.

My memories of that time are in part crystalline and etched like physical scars on my psyche, but there are also swathes of time unaccounted for so I have to rely on the memories of James who was with me throughout. It was a very traumatic first ten hours as the pain did not abate for a second and, reader, I was screaming. The medical staff were trying to figure out what was happening at the same time as giving me drugs to relieve the pain. They were maxxing out on everything they had.

“Lindsey, how’s your pain now?”
“TEN”

Eventually they said Pancreatitis and I remember being catheterised in A&E (sad face emoji). I was unaware at the time but James overheard the doctors discussing whether I should be sedated and admitted to intensive care. Pancreatitis is always life threatening, but is also not a rare condition. It is most often caused by excessive alcohol or gall stones, which turned out to be the reason for mine. Gall stones and associated pain is a nasty and uncomfortable business but not life threatening in the same way in and of itself. When the doctors looked at my liver function and blood results I heard one of them exclaim under his breath ‘Jesus Christ!’

I did feel that I was in serious trouble, and I was asking if I was going to die. A few confident registrars said NO! but most of the staff looked concerned. I begged them not to let me die. I told James I thought I would die from the pain alone, and that the hospital might accidentally let me die. After a fitful seven days on a surgical ward I was still really poorly. I was triggering their sepsis protocols and had to be put on oxygen. I started to feel like I might die during this period which felt incredibly sad. I experienced a confusing mixture of acceptance as well as annoyance. I didn’t want to die, but could accept it if it happened.

I was also on ALL THE DRUGS, reader! I was hallucinating and talking to people who weren’t there. Thank you, Tramadol. Whilst in my land of fantasy I thought to myself ‘maybe I should ask my dad how not to die…’

So I asked aloud in my head “Dad?”

And I had a vision of my dad sitting in an armchair facing away from me, reading a paper. And without looking round he replied, “Mmm?”. This single sound somehow simultaneously meant that he wasn’t worried and I wasn’t going to die here and now. Thank you Tramadol. And thank you, Dad.

I started to get better around the 10 day mark and was allowed home after two weeks to recover enough to have surgery to banish my gallbladder and gallstones. The short version of this trauma-fest is that I was rehospitalised before I could sufficiently recover. They took out my gallbladder as an emergency procedure the second time I was admitted with acute pancreatitis in November 2024. I was then rushed in by ambulance a further time in December with MORE acute pancreatitis. This time was a shocker because I was considered cured! So now we had to wonder would this become chronic pancreatitis? Why was it still happening? How could we stop it from happening again? I didn’t feel close to death at this point but I was acutely fearful of life with an additional chronic condition. I spent my worst ever Christmas in hospital on the Gastroenterology ward eating the xmas dinner of the person who had been in the bed prior to me. Thanks, Joan.

I was discharged in late December with a cornucopia of medicines and follow up appointments. One year later I have been diagnosed with a genetic condition that causes VERY HIGH CHOLESTEROL. I will take statins 4 lyfe but they have done an amazing job of bringing my bad cholesterol level down from 11 (glark! that’s very high) to 3 (normal). I have not developed chronic pancreatitis, my surgical scars have healed nicely and I met some wonderful mysterious Vigurs family members by kismet (read about that here).

Between January and now I have been focussed on one thing above all else: functioning.

I’m a carer for my two kiddos and drive my younger deathling to school as they can’t manage a taxi anymore to their specialist provision. I wanted to just get through the days alive and as functional as possible. I wanted to get back to the work of DEAD GOOD, I wanted to take some of the pressure off my partner and immediate family who had all had to pull together in my absence. I wanted a system for managing this new health threat. I just wanted to be alive.

And I was alive. I am alive. But as a way to cope I (unconsciously) stopped feeling any feelings. I was on functional autopilot, cruising.

"How are you feeling now, Lindsey?"
*in a small, monotone voice* "fine"

In the aftermath I realised that some other things had gone missing: I can’t recognise people’s faces in the same way. This is, weirdly, a huge deal for me. I was considered a SUPER RECOGNISER and regularly used to contribute to the research done at The University of Greenwich around this particular human trait. It is unfashionable to suggest that all autistic people have ‘super powers’, as being autistic often means a life of unwitnessed struggling. But I really felt like this was my superpower. Without it I feel cut adrift from my usual internal systems. It’s really really uncanny.

I have also lost my synaesthesia. I used to experience scents and smells as colours. And I would feel and smell colour coming from people. It’s gone. And I don’t know if these ‘gifts’ will return but I hope they do.

I’m still recovering from this ordeal. I’m still considering how I feel about being so ill and coming so close to dying.

The key things helping me to recover are:

• Family (blood and chosen) support system: James, my mum, KV, the kiddos, the witches

• A safe home to live in

• Therapy

• Medicines

• Pets

I’m starting to do the work of processing these experiences in therapy. My feelings are coming back in fits and starts. I have been blessed with good NHS talking therapies in the past but eight years ago I started seeing a private therapist called Jo. We talk on the phone once a month and I love her. Recovery is hard work. I am a wobbly person and Jo is my scaffolding.

I can no longer rely on alcohol and cigarettes to get me through social engagements and I’ve had to clean up my act (and diet) as a way back to better health. I’m glad to not be poisoning myself with these things BUT it’s hard. It’s like being naked.

I am also still the same amount of disabled as before the Pancreas Incident. So I’ll probably never get *better, better*. I think I may have PTSD as a result of the last 12 months but it’s not just the near-deathness of it all. It’s the broken systems (our National Health Service and the Department for Work and Pensions) and the debilitating creep of the admin and costs associated with being disabled, and a disabled carer.

I suppose my point is that you can come back from severe illness or injury but getting home or back to work is only part of the recovery. The resulting grief has much longer tentacles with which to tickle us.

If you’re still with me at this point in the Morto Porto, thank you! And congratulations. It’s so important to say or write BIG things out loud. It’s great to hear from people who have experienced similar things. It’s good to say this was hard, and it’s still hard, but I love you. I’m thankful to be alive. I’m thankful for our broken systems. I’m thankful for our broken country.

I will still die. But not today, lads.

Not today

.

It was World Mental Health Day on Friday. Let’s do BIG TALK, friends. I’m here for the REAL TALK. You can’t scare me with it. I’ve shown you my naked mental health now, and I said the word ‘vaginal’.

Love you bye.