25/10/2026
On Friday the 23rd of October, 2026, he asked me: "You wanna walk together in to the future?"
He reached his hand down and took mine from my lap as we turned into a dark corridor. With a push of the wheel with the good hand, I agreed.
It’s a corny event on a date to the Thessaloniki Science Center. We then rounded the corner into a dialogue on the dystopian nightmare that is unregulated AI and technology...so I hope that was not a prophetic event for our relationship! But his request...that meant something this year.
There is a certain amount of living you can do with only a "floated" diagnosis. For 4 and a half years, neurologists ping-ponged the diagnosis between eachother, tossed it at me casually, took it back, flipped it, analysed it, refuted it, followed it a little to abandon it...only one wrote it down in 2022 as a possible reason for my foot becoming so lazy I couldn't co-ordinate it into a run.
I was referred to "MND" specialists but it didn't appear on paper beside my name again until April 8th 2026.
April 8th, 2026. It's been almost 8 months.
I've finally had a moment to piece together April. Dia-day. Diagnosis day. We got off the Thessaloniki Metro on the way to the hospital. The wheelchair ran over a 3 inch nail and the tyre went flat. So we walked at a snails-pace to a taxi and then I rocked up to Neuro clinic B, AHEPA, in a wheelchair that was probably the same age as my mother.
I was handed my medical file. Told that my genetic test was clear of any known genetic variants/mutations for anything pertinent to my circumstance. That it was MND. That I needed to come back for a review of the atrophy happening. And then we had to go and get the tyre fixed...where I was advised that, if I didn't change my chair pronto I was gonna pre-disable myself before the MND had the chance to!
The only record or evidence I have of Dia-day actually happening is a message I sent my mother on the day and, due to IMMEDIATELY developing contact dermatitis from the push-rims of that hospital wheelchair, a tub of hydrocortisone cream.
It was easy to redirect denial into proactivity! I had to fundraise, and we had to get a car, and we had to construct the summer to ensure Pup could assist me in simple life-tasks that...for SOME reason...were becoming harder to complete.
I had been managing MND with kid-gloves for 4 years. Like...if I didn't touch it too much or give it the gravity it deserved, it was gonna stay as a whisper in dark corners. It wasn't going to progress at all if I just gave it a nod, a cookie, a nap, a rest, a mobility aid, mention it casually as though it was just some innocuous cold...it was just going to fade into the background...
That's easy to do when it's nowhere concrete on a file somewhere and no-one else is talking about it. I mean, eventually progressive paralysis and a struggling to eat and breathe will become too obvious to ignore but...no-one else had the gumption or gaul to table it before one team of doctors put all the OTHER doctors investigations together and said: Yeah...this is enough. It's ALS.
And, now, it's on the table for every meal. At the dentist, at the flu shot, on holiday, on dates. The elephant in just about every room! And it takes up such an absurd amount of space that it's shifted all the furniture and I struggle to fit the Gallows humour in.
Why is it that words on paper have made it far more real than before? Objectively, I'm still a slow progressor in ALS. Objectively, nothing changed between the 7th of April and the 8th of April...other than the inner tube of the wheelchair right before that extra piece of paper was handed to me!
But it did. Because the of Summer 2026 threw several crisis' at us. Two deaths; two cancers; two friends lost to their own drama. As though the universe was determined to show me that life is short and, often, fractious if you deny the poverty of time, and insist on wasting time further on denial. Denial is EXPENSIVE. 8 months of expensive!
We reached September no further in life than when we left April. In fact, we were behind! On support, in health, on finances. Worse: On eachother.
October has been spent catching up and, on the 23rd, in that simple moment of grasping my hand and asking me that simple question: "You wanna walk together in to the future?"
It feels like we are just a little bit ahead of this disease again.
