And it is going to sound really pathetic, but I’m dreading my twenty-fifth birthday next month. During the first few years of illness, birthdays were a time for despair because it was another year which I felt I had missed out on, time was passing without my actually progressing through life. And sixteen, seventeen, eighteen; important years, supposedly. I then managed to shake this off and have been fine since, but twenty-five!
I suppose the truth is that I always held up twenty-five as an age by which all this must be resolved; everything would be sorted by then, had to be sorted. If nothing else, I would grow out of it. And also twenty-five is a terribly grand age when I have achieved precisely nothing in my life so far and have never had a job. Well, apart from writing for Ouch, which I did all of once and won’t be allowed to do again. And then there’s the small matter of the three GCSEs… three… no A-Levels or degree. Just three incy-wincy teeny-weeny GCSEs. Three, I tell you.
I also comforted myself at my eighteenth and twenty-first birthday that come my twenty-fifth I’d be able to go out and get pissed with my mates and make up for the lack of celebration on these more significant dates. In fact, even if I am fully over this blip back to the levels of the summer, I shall still be worse come this birthday than I was at either my eighteenth or twenty-first.
I went to the doctors on Monday. In the waiting room there was a small child dressed as a pumpkin - I wanted to say to its anxious looking father, “You realise it is just a costume, don’t you? Your child hasn’t really turned into a pumpkin.” It had been a tremendous effort to get there and somehow I felt short-changed, even though my pain-relief was upped. But basically there is nothing he can do.
And this, together with concern from my folks manifesting itself in a renewed level of interest and various weird and wonderful suggestions, has got me researching my condition again. Just to see if there’s anything I am missing. Just to see if there’s anything happened in the years since my last serious look. Well of course there have been new bits and bobs but I don’t see how they could be put to good use. There are however some bits of information which I really should avoid on a bad day but can’t very well help tripping over on the Internet. There’s:
- Personal accounts from people who somehow got this diagnosis but got better through the power of prayer, sticking raw carrots in every orifice or some such nonsense. The heart sinks. Especially as some of these people are so evangelical about it; if you don’t have faith, they you can’t really want to improve.
- In-fighting between people with this condition, about the name of the thing, subgroups, the cause of the thing, treatment regimes, prognoses, all sorts of crap. I am really not taking well to conflict just now. There are some people who just thrive on the idea they are being held down and misunderstood.
- Mortality rates and specifically, accounts about people who have died from my condition. All the time I'm fighting a constant succession of minor infections, usually two or three at the same time, but I am never seriously ill with any of them and in time they all pass. But eventually some people have their immune system completely overwhelmed, minor infections become major infections; organs fail – like AIDS death, basically. A small proportion, ten percent and even then, well, much later on I should think. But I don’t want to think about it and I suppose I would rather not know about it. At least not when things are going badly. My life is in no danger just now, I mean not nearly. I might as well be considering how my childlessness and early menarche heighten my risk of breast cancer.
- Poetry. Any kind of poetry about illness.
Oh woe is me!
Life is unfair!
I have [insert condition]
And nobody cares.
I’m so very very ill
I can barely even walk
I want to kill (myself)
With a plastic fork.
For some reason I always think of that great First World War hero, Lord Flashheart who said “Just because I can give multiple orgasms to the furniture just by sitting on it, doesn't mean that I'm not sick of this damn war: the blood, the noise, the endless poetry.”
At school my nickname was Neil because I was tall, had long brown hair and sat around cross-legged, rattling on about peace and harmony. Today I fear I am living up to it in other ways. "I might as well be a Leonard Cohen record." Sorry guys.