HSCT diary day -7
The wind is howling around the fifth floor of the apartment at Inspiralta, mingling with the shrill wail of the police sirens, and the sun streams in from the south. The volcano is quiet. This morning, our apartment administrator Paco sent us a wonderfully understated email suggesting that the 20 or so stem cell transplant patients at Clinica Ruiz this month stay at home today as the situation in Puebla is ‘delicate but not a state of war’.
I had to laugh. States of war are exactly the sort of thing I am not remotely interested in at the moment. I came to Mexico for my health, not to find somewhere that may even be contemplating sliding towards any kind of state of war.
Not that Puebla is. Delicate is a good word for the situation right now. There has apparently been a little light looting of perhaps 10 or even 12 supermarkets over the past few days in the north of the city (probably didn’t feel that light if you were the shop-owner), and an awful lot of public discontent about the overnight rise in petrol prices by nearly 20%, as the Mexican government prepares to stop subsidising fuel and let the market dictate the petrol price from March onwards. It is not proving popular in a country where nearly half the population lives in poverty.
But all of that seems far away, even though it’s happening in the same city, and the same country, perhaps even a few miles up the road. Ill-health is a no-man’s land, where the growing pains in my bones (my new stem cells?) are of far more immediate interest than anything that is happening in the news or even outside my door.
Any ill-health takes you to a country of private introspection and – often – isolation, a kingdom of dysfunction that is yours and yours alone, where the only things that matter are inside. Everything you once took for granted – walking, talking, doing both at once – eating, drinking, speaking – can no longer be taken as read. They become an effort. Knowing where the nearest loo is becomes a necessity.
You rarely even realise at what stage you passed across the border to this kingdom, or noticed the border guards waving you politely through. Until suddenly, one day you realise it may be too late to turn back to the country of the well.
And – as you start to panic slightly – you realise that even if you did have a map back to the kingdom of the healthy, you can’t see the path any more in the twilight.
You trod it day by day, cigarette by cigarette, drink by drink, late night by late night, using all your energy for work or family or play. Yet without really noticing, your eyes grew dimmer by the day, as the nerves were nibbled away, and your legs grew heavier each hour as you walked onwards, oblivious, up that path.
Yet for so long, that growing weariness just seemed part of normal life. Perhaps it was age? Perhaps it was normal. Maybe everyone feels like this? You coped, you compensated. You stopped going out so much, but you still wanted to be part of your family, your workplace, your friends’ lives.
In other words you lived, and enjoyed. And paid little heed to the place you were walking to day by day, without noticing the cost of entry to this new and hostile land, the kingdom of the sick. A war-zone, where the real enemy is inside. It’s in you, inside your body, and now you have to find a way out.
Maybe HSCT is the way back. Perhaps the chemotherapy and the new stem cells that are so painfully making themselves felt inside my bones will instinctively know the way back. Perhaps the map is inside me all along; the route back to better health, or at least a halt to the ever quickening march towards disability.
I don’t know, but I and all the others here certainly hope so. And all we can do is focus on getting through each day. How do my fingers feel – are they numb again today as they touch the keyboard? Yes, they’re numb again, yet they weren’t on the days I had chemo. Why? Are my toes numb again? Only a little, and my feet feel better than usual. But then I’m not trying to walk to work and back, just to prove to my body that I can still do 10,000 steps a day, however long it takes. Why is my head aching? And the sharp pain down my back, perhaps sciatica, buzzing and tingling again?
I am registered with several MS sites, and another one pings in with helpful suggestions about drugs that may do little but will certainly cost lots. But at the moment, I have no interest in finding out what drugs might help with walking, nor in reading about just how ghastly living with MS is (and what products might help). I know. I’d just like my own body, with the help of Clinica Ruiz, chemotherapy and my own stem cells, which I hope are brewing nicely, to sort itself out into something more like normality, and for my immune system to stop eating away at my nerves.
It’s time to go to the rooftop to look at the sunset, and enjoy the sight of the volcano Popocatapetl as it re-emerges from behind the daylight haze. And maybe listen to a symphony of sirens as we sit and chat.
The best thing here is not just the treatment but the people – the other patients, many of whom are blogging their own journeys. All of whom offer a moral support and a camaraderie that I shall miss when we leave. They, we, are all in this no man’s land, waiting to see if the smog clears and the path back to health becomes visible and viable for us once more.
And perhaps then – one day, after HSCT – we can stop living beneath the volcano in this no man’s land, and travel away from the unpredictable eruptions of MS that are sometimes small, and sometimes deadly, in this kingdom of the sick. I hope the path is becoming clearer now as the fog perhaps begins to lift.