Sometimes I make lists. And those around me look on that with indulgence. It is something harmless for me to do. I make lists of things like cities with interesting sounding names (for some reason I am especially fond of Karachi and Malmo and Harare – I know a bit about the cities, but it is just for the sound of the names) or other words for walking – like striding or pacing or shuffling or strutting. I make lists either in the dim glow of a computer screen, or in perpetual twilight in a notebook with grey paper, crouched over it. I am quite sure that out of my earshot people use expressions like “coping mechanism”.
Well, here is a list, and it is a list that nobody else will see, because it is not one of my quirky little lists. I will call it the List of Things I will Never do.
- I will never get married or be in a relationship.
- I will never have children
- I will never hold down a job the way other people do.
- I will never live alone or be independent.
Oh, I could go on and on, and I could pretend they never both me, but sometimes they do, and I could pretend they always bother me, but sometimes they don’t. I could even start a kind of sub-list. I will live as if I were partially sighted, but there is nothing wrong with my eyes. Or is there? Perhaps now light would hurt them, would pierce them, would scar them. I will live the life of a recluse although I long to roam at random, to make impulsive decisions, to discover new towns, maybe not Karachi or Malmo or Harare, but just the next town, the town down the road, the village I overheard someone mention, the motorway service station, even. Oh, that’s another one of the Never Do’s of course – I will never drive.
But there is another Never Do and this is one that I suppose in a way I am proud of, but to me it just wouldn’t make sense to see things otherwise. I will never blame my mother. Never. She did what I would have done in the circumstances (and even though I will never be a mother, I can think myself into the thoughts of one. I am sure of that). She did what, probably, everyone else would have done in the circumstances.
My name is Karin Harding. Twenty five years ago, when I was a year old, there would have been a chance you would have heard of me. Not a certainty, but a chance. I was the first born (I love the sound of these Biblical expressions even though my family is not that religious) of a very ordinary couple, and I don’t mean that as in any way a slight. I suppose the only thing that was even vaguely different was that my mother was six years older than my father, but it wasn’t enough to be seen as weird. She was (and is) called Tara and was (but is no longer) a teacher, and my father is called Stephen and is an engineer. They were not rich, but not poor, and lived in a pleasant semi-detached house in a pleasant suburb.
Even my birth was apparently a very ordinary affair. Labour was of average length, I was of average weight, and when people forget (because they think it will hurt me) they say I was a beautiful baby. Well, I have seen the photos (despite some thinking I shouldn’t) and it is not entirely true. I had a scrunched-up little face and was a very average baby, not the kind they would use in commercials. But there was nothing wrong, all as it should be, and the right number of fingers and toes and all that.
Apparently the spelling of my name is accounted for by rumours of Scandinavian ancestry, though they’ve never done the DNA tests and stuff like that. Maybe that explains why I like Malmo, though it wouldn’t account for Karachi or Harare.
I was, apparently, a healthy baby, didn’t even have a mild dose of colic or anything like that. But when I was a year old, more or less to the day, my mother noticed that I had a skin rash. At first she wasn’t unduly bothered, and nobody else would have been. She treated it with the gentle lotions that they make for such purposes, and was relieved that it seemed to cause me no especial discomfort.
But the gentle lotions didn’t work, and the harsher preparations from the doctor did not work, and the rash grew and thickened, and responded to nothing. It mystified the specialists. I was otherwise healthy – all the vital organs working as they should. Finally an eminent Harley Street dermatologist diagnosed an extremely rare condition called Warnock-Williams syndrome, after the doctor who first wrote about it and what I believe is referred to as Patient Zero.
As they say in the medical dramas that I watch even though it’s disapproved of (after all, I’m a grown woman now!) the prognosis was not good. Oh, in itself it would not kill me, though there was a chance of limited life expectancy, but – well, I can be frank here and use the words that you’re not supposed to use any longer. I would be a freak. The kind of person who used to be put in circuses and gazed at with fascination acid-bathed in horror and pity. As the twentieth century drew to its close, people spoke instead of care plans, but perhaps it amounted to pretty much the same thing.
My parents were earlyish adopters of the Internet, and it was through it that they learnt about Dr Harrisson. Dr Andrew Harrisson. He was seen as a bit of a maverick, but had a great string of apparently legitimate letters after his name, and a gallery of before and after pictures that seemed nothing short of miraculous. And here’s what seemed equally miraculous. He wasn’t in California or Australia or anywhere like that, but in Cambridge, only just over an hour’s drive from the family home in Lincolnshire. So they only needed to raise the funds for the treatment, not for travel or accommodation or anything like that.
Local people rallied round them, and the money was raised quickly and easily. I have insisted on my parents talking to me about it, though I realise there is no way I can know exactly how much they are telling and how much they are withholding. But I do believe they are not telling me any lies. Apparently our own family GP, Dr Gibson, was almost neutral on the subject. She warned them not to build up false hopes, but made no intense attempt to dissuade them. The treatment itself sounded so reassuringly benign. It did not involve injections of suspect substances, or regimes of powerful drugs. It was administered via a lamp. As Dr Harrisson said, “Not unlike the lamp they use on newborns with jaundice.” As it happened, a baby born in the same ward at more or less the same time as me had received such treatment, and my mother remembered that it caused no distress at all, and was effective within a few days, and the baby left the hospital in perfect health. There was nothing disturbing about that. She had not worked since my birth, and now her plans to return to teaching had been put on hold because of my condition. So she took me to Cambridge, and my father couldn’t leave his work, though he did come to join us whenever he could.
Dr Harrisson was not based in one of the venerable university buildings, but in a modern, functional looking clinic on the outskirts of town. It was on the kind of genteel industrial estate where there is often also a Travelodge, and this was the case there. Mum booked a room, though she spent nights at the clinic sometimes, even though it didn’t offer accommodation as such, only a couch. Dr Harrisson told her that they were hoping to offer accommodation for relatives soon, though as she said, “I don’t think I saw any evidence of it being built, but to be honest, I didn’t look – it wasn’t there THEN, and that was all that mattered.” When I have urged her to talk about her impressions of Dr Harrisson, she says something along the lines of, “I would like to demonise him, or to admit that I was taken in by his charisma. But frankly, Karin, the truth is neither. He was – such an ordinary little man. Not distinguished looking. He didn’t make me uneasy or get on my nerves or anything like that, but maybe I was so awash with false hope I missed the warning signs.”
The treatment went well. Of course, what I mean is, it APPEARED to go well. Within the first week it was as if that terrible top skin was shedding under the light of the Harrisson Lamp. He warned my mother that there might be an apparent “Worse before it gets better” stage, but it would only be superficial, and was no cause for concern. That made sense, and it did not panic her as my skin flaked and reddened. Because through it she could already catch glimpses of what was to come. The promises of it not being at all distressing were true, as, so she tells me, I often slept through it. Three weeks after the treatment began, I was in possession of a clear, smooth, unblemished skin. “Yes, it was like a miracle,” my Mother told me.
Dr Harrisson said it would probably be best to avoid exposing me to strong sunlight for a while, but that was sensible advice for a very young child with a fair skin any way. But that was the only advice or warning he gave.
The next few months were like paradise regained for my parents – a paradise they only realised they had lost when it was gone. I spoke my first words (there is still some debate as to whether the first actual word I spoke was Mama or Doggy – as I had a picture book with a very large hairy dog in it) and took my first steps, and was taken on my first holiday. It was nothing posh – just a couple of weeks in a caravan on the Welsh coast, and in October, when it wasn’t too warm. My first conscious memories are of this time, and there are happy, if vague ones, filled with my own and my parents’ laughter, and with my first sight of mountains, and the warm face and liquid eyes of the miniature Welsh pony in the field by our caravan.
But only a couple of weeks after returning from that holiday, my parents began to notice the warning signs. Oh, my skin was beautiful, almost like a newborn’s skin, which in a sense it was. That was one of the last things to be affected. One day, after a day out in the park on the kind of day holiday brochures call “bracing” I was fractious and weepy. My parents were determined not to make me live the life of an ailing child when I was “cured” (and though of course I now have to write that word in quote marks, they had no reason to think otherwise) and not to over-react, but that night I ran a high fever. At this point they DID worry and called in Dr Gibson. She took their concerns seriously, but told them that with rest and fluids for a few days I should be fine – still, they must not hesitate to contact her if the situation did not resolve itself.
A curious expression that – “resolve itself”. It did not. The fever raged, and though I did not have the words to articulate it, all my gestures indicated that I had a severe headache. They dreaded meningitis, even though (ironically!) there was no sign of a rash. This fear was proven ungrounded, but soon enough it was clear there was no cause for relief. Dr Gibson referred me to a specialist, and, so my Mother has admitted, did not say it was “only a precautionary measure” or something like that. The specialist, Dr Singh, did not mince words, though he was, it seems, a compassionate if plain spoken man. On discovering that I had been treated by the Harrisson Lamp, he said, “I have not encountered a case like this before, but a colleague has. I am afraid you must be prepared for bad news.” Gently, but directly, he told them that in rare cases the lamp triggered an extreme and potentially fatal reaction to sunlight. “It isn’t technically an allergy, but we call it one,” he said. He told them that it was not, as things stood, life-threatening, but – in that phrase that is meant to be kind and yet is cruel, with involuntary cruelty – life-limiting.
Though his tone was gentle, it was not a thing you could break gently. I must – quite literally – never see the light of day. Not even through a chink in a curtain, not even for a split second. The results would be catastrophic. I would develop a fever no medicine could cure, it would make my skin scream in agony, and even put my vital organs at risk.
Perhaps I should start another list – Things that People say that are Not True. Well, one phrase that would feature heavily on that list was “You never miss what you never had.” But let me qualify that. My parents realised the supreme bitter irony of the situation. For me to have anything at all approaching a childhood that, if not happy, was bearable, I would have to know about the things I would never have. I would need stories and stimulation, and they could not all be tailored to the twilight world.
It goes without saying I was home-schooled. In fact, I doubt if the local education authorities would have made any fuss if I’d effectively not been educated at all, but I did receive an education, and am grateful I did.
The only time I breathed fresh, clear, outside air, was after dark or before dawn broke. We worked to our own timetable. I had a physiotherapist and an exercise regime, and could walk but sometimes my legs felt as if they were atrophied even though, physically, they were not. There was a wheelchair “just in case”. I was swathed in covering over covering, even on the darkest night of the coldest winter. We lived in a small town and nearly everyone knew about me, and those who came new to the town were soon told, and everyone was studiedly upbeat if they met me, but I know that in my absence they said, “Poor child,” and I can’t blame them. I was a poor child, and now I am a poor adult. There is nothing ennobling about this. At the absolute best there are coping strategies, and even those can be very paltry and bitter.
But here’s the thing. Dr Harrisson fled the country a couple of years after my symptoms developed, and though it was rare, I was not the only one, though somehow there was never the community of illness that forms around some conditions. And only last year, reports began to emerge that he had “redeemed himself”, working in a hospital in Brazil during the pandemic. I am now old enough for my access to the internet to be unfettered. More than old enough! And I have discovered that he now feels confident enough to return, if not exactly as a hero, then as a man who has redeemed himself. And I am seeking more information, and I am planning a journey, and it is remarkable what you can buy on the internet.
TWO MONTHS LATER
I have always, as you will have noticed, been too fond of the word irony. But please bear with me when I say it is appropriate now. My condition has reversed! I did not suffer any reaction from going out into the light. It defies medical explanation, but things often do. I could spend all the time I wished in the daylight and the sunlight. But of course I will not. Because the rest of my life will be in a prison cell, for the murder of Dr Andrew Harrisson. On a crowded street, with witnesses, in broad, brilliant daylight.