In Chuck Palhniuk’s Fight Club, Tyler (played by Brad Pitt in the film) accosts a terrified high-school drop-out and threatens him with a gun, [“You are going to die, Raymond”]. When satisfied of his victim’s fear, Tyler persuades him to return to his studies and then lets the man go: “Tomorrow will be the most beautiful day of Raymond K Hessel’s entire life. His breakfast will taste better than any meal you or I have ever tasted.”
The last few weeks, since my MS symptoms have subsided have felt like the coming of a second summer. A (patchy) series of dry-ish days has arrived in Bristol – and I’ve been out on my bike. I’ve not only felt good, but felt happy. Pins and needles in fingers and toes barely a mild inconvenience. I’ve felt… intensely free.
I have cycled to my in-laws (twice); and back. I rode an unexpectedly competitive hill climb time in my club’s monthly competition. I’ve got sunburnt. The mornings have felt light. The nights short. I chased my boys and my life has felt like it was back to what I wanted to be doing.
But then, today, as I cycled on uneven surfaces and dirt tracks, the same vision issues that had plagued me early this year returned. Disappointingly. It’s still there, inside me.
I have anthropomorphised my MS. I imagine it (him) like a pantomime comic book super-villain – dastardly and cunning; never to be trusted in his deceit. My own arch enemy. I thought I’d shaken him for a while – but now I see that he’s still clinging on by his finger nails. Conniving. But today I smiled to myself: he may think he’s weathered the worst, but my defences so far (a new diet, a few steroids) will feel like mild irritants compared to the treatment-bomb that he’s going to be hit with this autumn. Poor him. Perhaps it’s even overkill – even comic book bad guys elicit pity when they’re beaten.
Because I have now lined up the next critical stage in my offense against MS: during my latest appointment with the neurological consultant we decided to book me in for a course of “Lemtrada” treatment in October.
There were several drug choices available – the decision is to balance effectiveness against side effects. Lemtrada (aka ‘Campath’), within the confines of the NHS, is probably the most nuclear of options. It’s (mild) chemotherapy served cold over a week long period. It’s designed to “reset” the malfunctioning elements of an auto-immune system – but it’s a careful balancing act. Choosing the treatment is taking something powerful into your system that can knock other processes as well – perhaps most commonly, your thyroid. So it’s not something to be taken lightly (and I’m not). The list of side effects is both intimidating and long. The consultant had to be convinced I was serious.
So is the title of this blog being said by me, or to me? Maybe I just like the phrase. I hope my arch enemy doesn’t have the breath to speak so many words. If he’s reading this he should be warned: I’m not only saying it with a smile, but with a playful accent as well. I have a plan, and he doesn’t yet know it.