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Catharsis

 

When I was 19, I had a numb thumb. This didn't really affect anything I did, and I would shock/amuse friends by plunging it into a hot cup of coffee in the college refectory - I couldn't feel it. I was doing a "Cert.prep." course, short for "Certificate of preparation for higher education" at the local tech. which would have got me into university, had I not suffered from that old school days thing of failure to "apply" myself, also known as terminal laziness. I finally, grudgingly, agreed to go to the doctor with my numb thumb, and was quite horrified when a letter from a Sheffield hospital containing an appointment and instructions on what to bring with me (!) dropped through the letter box. I was most indignant. However, I duly turned up at the hospital at the allotted time and date, and was admitted. They stuck pins in me, everywhere, and even ran cotton wool across my eyeballs to see if I could "feel it" - ?? I mean, would you have felt it? That wasn't the worst. The next day they subjected me to a "myelogram", involving lying face down on a trolley and having dye injected into my spine via my neck, so that they could watch it's progress on three monitors above me. But, by far the worst, most embarrassing thing, was returning to my bed to find that my period had started, glaringly obviously in the nasty, short, pristinely white hospital gown. I then had to lie flat in bed for 24 hours, supposedly to avoid the ensuing headache - ha ha. What a palava for a suspected trapped nerve. I escaped three days later, and relegated the experience to the "Thank God that's over" part of my mind.

Remember the miner's strike? Having given up college, I was then working as a clerk doling out coal to the striking miners and keeping track of it. It used to amuse me that the miners' wives would ring up demanding to know where their coal was...I mean, what does one say? My family had long been unable to get any coal and, suffering an open fire as we did at the time, we had resorted to giant logs which were usually damp and wouldn't burn, or peat logs, thankfully now long forgotten.

When I was 20, having failed most significant high-school exams and also having "failed" in my "search" for gainful employment anywhere, I was sent for interview for a part time position as general office dogsbody with a company that didn't really exist, except in the fevered minds of politicians desperate to get us all off the unemployment register - a sort of 1987 New Deal. I had every intention of avoiding this travesty of 20 hours slog per week in return for £52, BUT, the interviewer turned out to have owned the local butcher's shop from my childhood in Sheffield. We ended up chatting cosily, about Sheffield, about the current snow which had necessitated my appearance at the interview in green wellington boots - I got the job. I was my own worst enemy. When I turned up for work the week after, I was shown to a completely window-free, airless room, with a desk, a chair, and a telephone, which promptly rang on my arrival. It was actually a switchboard and I was horrified, but after a week or so I had got into the swing of things, read the manual and changed the password, set all regularly rung telephone numbers to "123", "124" etc (a system only I knew), and lo - I was a receptionist. I was damn good at it too. The only problem was the stairs, the place being above The Famous Army Stores and up a steep flight of concrete steps. Oh, and the only loo was up yet another set of stairs just outside my "office". But hey - a three course lunch from the works canteen was only £1.10, which more than made up for it.

My 21st was coming up. My then boyfriend was being his normal waste-of-space self, and being still young and unawakened myself, I refused to see it. I laugh now, at all the excuses and lies I believed, but at the time I expect the final realisation and "I told you so"s were very painful. However, I digress. I had been finding the aforementioned stairs more and more difficult, along with staying upright whilst waiting in the bus queue on the way home, but this all righted itself after a five minute sit down, so I wasn't too worried. Until I went blind in my left eye, that is. It was quite painful, and inconvenient, but even that righted itself in a few weeks. I've never been one to bother with the doctor unnecessarily, mostly on account of my never being ill. And anyway, the surgery was at the top of a hill and I was learning to avoid such journeys. The optician obviously suspected more than I did, and even wished me luck as I left with his assurance that my eye wasn't actually damaged and would "come right on it's own".

By this time, my Mum was going to get married again, and as my sister had got married the previous year this would have left me on my own in a three-bedroom council house, a situation I felt sure the council would not allow. However, the waste-of-space came up with the excellent idea of moving in with me, sharing the bills etc. My Mum and I went to the council to suggest this, the wheels turned awful slow as council wheels are wont to do but, eventually, they agreed.

My Mum got married and moved out, taking almost all the furniture with her - it was hers after all, and she did leave me the 3-pc suite (a wonderful creation in orange vinyl, I recall), the fridge, the cooker etc. We (w.o.s.) and I were going to buy new stuff anyway. Oh yes. He came one Thursday, after work, and he was, quite frankly, appalled. The nice, cosy house he had visited to see his girlfriend was now reduced to this: in my eyes a starting point from which to begin the rest of our lives together, in his eyes, a hovel. His expression said it all, but guess what?..I didn't see it. All these years later it really is laughable, so I laugh, and put it down to youth and naivete. He stayed around for a couple of weeks, and I was truly happy, you know, being picked up from work by him and his stupidly large motorbike, going with him to some cafe where all the bikers met up to not drink coffee and show off their "machines", calling down to his mates from the bedroom window to go away because we were in bed etc. Becoming 21 passed in an alcoholic haze for me, then shortly after, having dragged myself up the hill to the doctors, I was told I had Multiple Sclerosis, but don't worry, it's not going to be as bad as you think.

There is never a "good" time to be told something so devastating, but for me that was a particularly awful time. The very mention of MS anywhere made my blood run cold and I avoided it at all costs. Jacqueline Dupre, the brilliant cellist whom I had never heard of until then, died, ostensibly of MS, at the age of 42 - I was 21, so began planning my life on a scale of 14 years...

'That' evening I went straight to my Mum's, and phoned home to ask w.o.s to please not go out, as I had something to tell him. He did go out, so I sat on my own until 12:30pm, and told him when he came in. He said "bloody 'ell", and made me a cup of tea.

There then followed a series of injections and 3 weeks off work, during which time I learned to walk almost properly, and suffered only a little sensory loss i.e. couldn't fasten earrings etc. The upshot of all that was - I got better. I returned to work, carried on getting the train to visit my brother in Liverpool, and my friend the student who was at uni in Bradford, going "on holiday" to a small village near Skegness, where a friend and I would ride horses/drink copious amounts of alcohol for a week (and, occasionally, both at the same time - I used to wonder whether a horse could be classed as a vehicle, and whether one could be found drunk in charge. Actually, experience tells me that this does happen, although never in an "offence" capacity. Not to me, anyway). I still hated the way any mention of "M.S." made me feel. I was alright, me. No ill effects, other than an inability to walk round giant superstores without serious danger of collapsing. I could avoid stuff like that easily enough. My student friend still cut my hair - whether this was wise in view of the fact that she was an art student is another matter - we still drank together, talked about blokes, what she planned to do with the rest of her life etc, and my life continued. As it always had. Oh - and before not very long, I was pregnant.

In those days, I could not afford to buy an over-the-counter test from the chemist, so I had to take a urine sample to the hospital and get the results from the doctor's surgery in a few days, which was a pain, because the hospital was reachable from the town centre on foot, but for me was a long, long way..oh well. Anyway. They gave me FIVE negative tests. I felt so sick, and so ill, because I was newly pregnant, but the hospital kept telling me "no". I remember - I was at home one day, on one of the two and a half days I didn't work, and I phoned the doc's for my 6th test results. I was going away to Skegness that day, and I knew what the result was going to be anyway, so I hung on the line, my mind on other things. The very lined harridan of a receptionist picked the receiver back up.

"Yes, it's positive, that one", she disapproved.

"Is it??"

"That's what it says here".

My mouth hung open while I struggled for words.

"I..suppose I'd better see the doctor then", I managed.

"I'll put you through to appointments", she said, her voice radiating disapproval - she merely sounded silly, as "appointments" was a large battered ledger about two feet further along the same desk.

An appointment made, I went upstairs to my bedroom, where Thing was asleep, in my bed, for a change. I told him, as he had a right to know. He knew about the previous negative tests, and would have taken some convincing had I cared, by now, what he thought. I went on with my last-minute holiday packing, and he announced, from bed, "I'll marry you, if ya want".

Not too long after he had pretended to move in, I had discovered that he was seeing someone else. He wasn't too clever about disguising this fact; after all, she did live very near to my sister, who often saw him round about, but, of course, I didn't believe it ;). In the August, he came "home" very very late one night and, after an extensive and intense quizzing from me, he told me that he had been at the hospital with Her while she gave birth to his daughter. This was her fourth child, she had two divorces behind her, but worse than all of that - she was 27!!! I was 21, and 27 was ancient! The love I had felt for Thing was by now quite dead, and I felt ridiculous and stupid for being so taken in etc etc and just wanted to put an end to the whole charade once and for all, so, after he left for work that day I put all his stuff into bin bags and stacked them all neatly in the front room, left a note on top of the fire instructing him to be gone, with them, before I got back, to leave his key, and I also telephoned his mum and told her to expect him when his shift ended.

I should have known it wasn't going to be that easy. I returned home after my week's holiday to a binbag-fest from hell. Thing hadn't left - he just rummaged (or in this case ripped) through the bags every time he wanted clean/different/fresher clothes. The bags were mostly emptied out all over the room, along with all his dirty stuff including his liberally coated in coal dust work overalls and all his dirty underwear and socks - I went ballistic. Half way through clearing it all up, his cousin knocked on the door for him. My ire was still a long way from cooling, and was not improved by the revelation that this cousin had known about the "other woman" all along, and that the actual plan/agenda had been to get me out and move her - and all the kids - in. The "other woman" was, in fact, me.

This news should have been startling and shocking, but it wasn't. Not really. A lot of things now made perfect sense, and my own stupidity was becoming embarrassingly clear, even to me. I began leaving the house via the back way as he didn't have a key for that particular door, and after a few weeks when I was tired of this, I spoke to him on the phone and told him that if he didn't pick his stuff up that day it was all going out to the rubbish - the bin lorry was due the following morning. That worked. He took it while I was at work.

I was much happier, knowing that the whole debacle was not due to anything I had done, and I continued working - the council actually reduced my rent to £10 per week as I was now on my own, which meant I now had £10-£15 to fritter away on bus fares after the rest of my wage paid bills/bought food etc.

My sister's little boy would be seven months older than my baby, so I got quite a lot of baby clothes etc from her. I never actually looked pregnant, and hardly needed any specific maternity clothes; I put this down to being 5ft 10ins tall, and skinny - I weighed around 10 stones, and went up to 11 and a half. Of course now I recall this wryly, as at the time I thought I was enormous - something to do with being female, I believe ;). Being pregnant didn't affect the MS, except when I had the ultrasound scan and had to drink fifty pints (really 1 or 2) of water - the same for all scanees but much more trying for an MS bladder - and the short walk from the antenatal clinic to the bus stop was made bearable by the newly installed bench. I was used to not running up or down stairs, and I'm sure my workmates put it down to the fact that I was pregnant. Some of them probably didn't believe me, as I finished work 4 weeks before the birth and was hardly showing, the same way that some, probably most, of them didn't consider the MS at all. To start with, it was to the outside world an invisible thing - not "disease", as that suggests that others might "catch it" from me, or that I might require assistance of some kind, and people generally don't want to do that.

When my life first started becoming difficult, when things like walking up hills/standing for prolonged periods/stairs etc were being labelled by my brain as "avoid at all costs", I did wonder what was wrong with me. It occurred to me that there might be something seriously wrong, and I pondered this for a while, and came to the conclusion that yes, ok, this thing was serious and would probably involve an operation...but then I would get better! It would take time, it might be painful, but I would recuperate, and it would be worth it just to be back to normal. The relief I had felt, just in coming to that conclusion, was like sunshine after the rain, to be corny.

Within a week I was at the doctor, fully expecting to be told this. She unfolded a letter which was in my file, the one which they always took out and read before even speaking to me - there was no point trying to read the lines which had been highlighted with one of those green pens as they never put it down on the desk - and she said "There's no easy way to tell you this..." blah blah blah.

In February of 1988, my son was born. I was in labour for 16 hours with contractions every 3 minutes all the way through, I was in a room on my own for most of the day with a television for company which had sound but no picture, was given no food as apparently food is a no-no for labouring women, and at one point a children's cartoon, narrated by Johnny Ball, about a cat, came on the television, leaving me in floods of tears, because the cat was called Philomena, as mine was. Labour ended the usual way at 11:12 at night. I was so happy he was a boy, and I named him my chosen names, which I had not revealed to anyone. I was so looking forward to a good night's sleep that night as that hadn't happened for ages, me being a stomach-sleeper - it didn't happen that night either. I slept in fits and starts, and it was very difficult to turn over. I was already awake when the nurse came in at 6. My son had been in the nursery overnight, and had fed well and was happy. Of course, no one had warned me about the bruising. No chair I sat in was comfortable. Such a simple thing, and they don't tell you! I mean, Ow! You may laugh but just you wait.

I wanted a bath, so I went to get one. Hmm. I was convinced I was going to faint. I looked around for the pull-cord nurse-summoner, and saw it was over by the door. I would never make it out of the bath, let alone that far. Of course, I did make it. I sank gratefully onto the conveniently placed chair, my head spinning and blood pounding in my ears, and noticed the pull-cord above the bath. I sat where I was for a while, recovered slightly, and slunk back to my bed in shame.

I stayed in hospital for 3 nights. The other mothers were amazed that my son was 7lb 10ozs - I was too, but in reverse. I had been 9lb 2 at birth, as had my brother, and my sister had been 10lbs, as was her son. I had been expecting that sort of weight, and was very happy to be proved wrong ;).

My Mum arrived to take me home, complete with new baby clothes and baby-nest for my son which she had picked up from my house. I dressed in the maternity dungarees I had entered hospital in and my enormous pink duvet-coat and, feeling exhilaratingly slim now the bump had gone, I followed my Mum and the midwife who carried my son to the front entrance of the hospital. At least, I tried to. Off they went, steaming ahead, while I tried desperately to keep up. I found it difficult to stay upright without stooping, and my vision kept sort-of fading out. I caught up at the doors, and gratefully sat down while Mum went to bring the car right up - well it was snowing.

That first night at home with my son saw me throwing my principles out of the window and giving him a dummy, finally getting to use the steriliser I had purchased from Mothercare months before, and also me being totally, absolutely freezing cold. I shivered along, thinking I had better not put the central heating on full but in the end giving in and doing just that, and going to bed fully dressed. I reasoned that my son would be ok with this, as he'd only known the hospital up to now, and those places are always boiling.

Over the next few weeks, I discovered that I could now only walk to the local shop if I had the pushchair to not lean on, but just be there in case I wobbled. When my son was 2 months old, I resumed going to my sister's, which involved a taxi journey, hefting the folded pushchair in and out of the car boot, then struggling up to my sister's front door with it, my son, and the necessary bag of baby paraphernalia, which was all a vast struggle to me at the time.

The house I lived in then was a 3-bed semi, with stairs which were nothing like the concrete steps I had endured at work, and I was poor, and life was hard, but my enduring memory is of creeping upstairs, trying not to wake the baby, and standing next to his cot, rocking him before putting him down to sleep, judging how long it would be until my legs gave out, and wondering if I could descend gracefully to the floor without waking him.

After 5 months my friend asked me to go on holiday with her, to that same place. The idea appealed. I would not leave my son with anyone, being totally in love with him (awwww) as I was, so, after haranguing my father to give us a lift, we filled his small car with luggage and set off for the farm. I found that peoples' attitudes toward me had changed. This was a very small, insular country village, and I was a single girl whom they had last seen a few months before, on the beach or in one of the 3 village pubs, and suddenly here I was, unmarried with a baby (speculation as to his parentage was rife), swanning around in cropped tops and shorts (having completely regained my figure), as bold as you like! I hope this conjures up images of gossiping women (think of Les Dawson) for you as it does for me. My friend and I played on this to an extent, teasing the villagers unmercifully by saying nothing to them but plenty to each other, just out of earshot, and answering non-commitally when someone asked about the baby's father. They assumed it was someone local, apparently not taking into consideration the fact that I only spent at most 3 weeks per year there. I didn't really know anything about small community mentality just then. I wonder would it have changed anything if I had.

I used to moan to my sister that I would never find a man now - oh she must have been mightily sick of hearing that. I would say, "Hello. I'm 23, have a young baby and an incurable disease. Will you marry me?". I shake my head as I read that. Though vehemently denying it to myself at the time, I was very frightened. I knew nothing about MS beyond the way that it was currently affecting me. I think I knew it might get worse, though I'm not actually sure I even knew that. It was horrific enough that I had the damn thing - details were irrelevant. Whatever happened would happen, and I would deal with it. Denial was the only possible course - that did me very nicely, thank you, for a few years. The MS progressed in it's own insidious way, but really the worst was being unable to walk very far...

Anyway, on that last holiday, I had met a man. He was 7 years my senior, and a local businessman. After a year of going to stay at his house for a fortnight, coming home for a fortnight etc, I moved there to live with him. We were married in 1990. This was a vast, vast mistake, but by far the worst mistake I ever made, one I regret daily, was allowing him to adopt my son. I arranged it all, so that all he had to do was show up at court and sign papers, and all I had to do was try and explain to a 4yr old why his dad didn't have time to take him for the promised McDonalds afterward, and do the necessary consoling. My ex thinks he was and is a very good father.

All three of us shared the bedroom in his tiny bungalow for three years, then he had another bedroom built on - this didn't make the actual house any bigger, but it suited my wall-walking needs. I had moved down there originally on the promise of looking for and buying a bigger house. For a time, I had a small petrol-driven vehicle which an MSer who had lost most of his sight had donated to the local MS Society, and which was on it's very last legs, but I loved it. I took my son to nursery in it - every week day, as I wanted to get him used to other kids before starting school - and I would go off around the countryside for drives, whenever I could. "Poor bloke", I would think, "MS, and losing his sight. How terrible". How naive.

The first really terrifying bout of Optic Neuritis hit when I was around 26. It wasn't just the blindness in one eye, but double vision. I trekked over to Sheffield to see the neurologist who had originally diagnosed the MS, saw a registrar (of course), and was told there was nothing they could do except prescribe steroids, which he did. My own GP prescribed more when these ran out, and a few weeks later, my vision cleared.

I had nothing to do besides looking after my son, except read, avidly, so I read more - Stephen Donaldson, Douglas Adams, David Eddings, Guy Gavriel Kay, Terry Brooks, Tad Williams, Marion Bradley, T.H. White, Stephen Lawhead - and got heavily into the Arthurian legends. I have a very nice hardback copy of "Le Mort d'Artur" which I bought in Tintagel...ah memories :). All escapism. I would sit on the beach at Tintagel and pretend I was Morgainne ;). Of course, I hadn't much money, being on disability benefits, but as my ex paid the mortgage - the crippling sum of £35 per week - I managed to pay for all holidays, bills, cars etc. My ex couldn't shout his true opinion of my illness too loudly (he didn't believe me) as the DSS might stop his (my) money. I didn't totally get that he thought I was making it up about the MS until I was at the doctors one day - he was with me, and we were as usual in the middle of a blazing row, and I muttered darkly, "You don't believe me anyway", and he looked at the doctor and said "Well no, I don't suppose I do". The poor doctor was flummoxed. He was a good friend to me, but obviously had to call on all his diplomacy skills just then ;). I suppose I ought to explain here, or just say a few words about why I was actually there. Remember "Hello. I'm 23..." etc? I'm afraid I truly believed that. To truly believe that one's life is over, at 23, was a major, untouchable block in my mind. As my husband once excellently described of his brother's death from cancer at the age of 27, which he still hasn't addressed or come to terms with: "It's like having a room in your house absolutely full of broken glass. You know you have to go there one day, but you also know it'll hurt like hell, so you don't go there", followed by his elegant shrug, which says in an "I will brook no argument" fashion, "Obviously". My life was over but my son's wasn't, and I had to make everything right for him - Dad, loads of relatives, good school, friends, etc etc, and I was very good at that. I remember the birthday parties when he would invite his whole class and I would hire some venue...he loved it. And when my vehicle was running, I would take him everywhere possible. He was my life, and I lived for him.

Around that time I was still doing the yearly appointment thing with the Sheffield neurologist who originally diagnosed me - or rather his registrars - and I found that the long trek over there was making me feel ill. Car sickness, which was something I had never suffered from in my entire life. I was inclined to blame it on my ex's driving , having no idea that it could be brought on by MS. At this appointment - and the previous one - the registrar wanted to admit me for a week, when they would "sort me out", whatever that meant. I had been unwilling to leave my son before, and of course, I never went to the doctor, for anything. I decided that this time I would do it, because I had recently had a rather nasty bout of double vision which incidentally came on while I was in the dentist's chair gazing out of the window, and for the reason that oral steroids made me put on weight, and I was assured that "this" wouldn't. However, that was not true, although it was quicker to disappear after. I thought I would only have to go in for a week. I also had no idea that this "IV" involved a needle inserted into the back of my hand (!!) and left there for a week! I was also expected to endure physio for yet another week. That was actually the best part, although I couldn't do much more than 30 minutes per day. I didn't know why they had put me in this ward anyway - the other people were all so disabled. I made friends with a woman who had MS and had also suffered Myasthenia Gravis, which sounded terrible. I was actually pleased that I "only" had MS. These people were obviously much more ill than me. I felt like an interloper.

In late 1994, my ex did the best thing he has ever done in his life, and bought me a powered wheelchair. Before it was chosen and paid for, I made absolutely certain that he knew it was over between us and that he knew this gesture wouldn't change that, and then snatched his hand off. I know I shouldn't have accepted it, but I make no apology. My wonderful, excellent chair changed my life. The vehicle from the MS Society had only lasted about a year, and I couldn't walk anywhere much, but this chair! I only needed it outside, which was perhaps as well as it only just fitted in the hallway of our tiny bungalow but, as when I was a teenager, if there was a chance to be out, I took it. I would take my son to school in the morning, go home until my beloved home-help left at 9:45, then go out along the sea front as far as Butlins and then come home as that was the limit of my chair batteries, charge them for half an hour, and pick my son up from school. Sometimes it was raining, even snowing, or very grey and miserable - I didn't care. I preferred winter, as the place wasn't then swarming with holiday makers. Such valuable thinking time. It was on one of these journeys that I made up my mind, and telephoned the Citizen's Advice Bureau to find out the name of the best divorce lawyers in Skegness.

In that marriage there was violence, but no fear. I despised and pitied him - still do. I knew he wouldn't go far enough to actually incapacitate me, or mark me at all, so my growing anger at myself for ever thinking that I actually needed a man at all was compounded by the mental self-torture of this, and by the fact that everyone knew me - or knew what my ex told them of me. What he told them was not very nice, and I didn't discover this for years. So, when I actually realised that "You'll never manage without me" was just another manipulation and that I could manage perfectly well - better, even - without him, I made him leave. It was his house, but I was a mother-and-child, and it was only fair.

That took almost a year. It would have been less, but various "problems" were thrown up...etc. In early '95, I had been supposed to fly out to Las Vegas, with my son, to stay for two weeks with my brother and had been saving money accordingly. However, my situation blew up and I had to pay for the divorce, and various other things, so one day I phoned my brother to let him know that I would not after all be coming. He said something to the effect of "Yes you are", and indeed yes I did, in March, with my son. We had never flown before, and the flight out was excellent - a real adventure. The return flight was also an adventure. This time my brother was not with us, and I and my son had to manage on our own. This entailed a desperate plea to the woman in the FedEx office in LA airport to pleeeeeeeeease help us, after being left at a bus stop by a young airport employee, struggling onto a bus without having a clue where it was going, and crossing the busy airport road with only my 7 year old for support, a 7 year old who was also desperate - for the lavatory - and relieved this into an airport waste bin... the FedEx lady did help, and an attended wheelchair duly arrived and whisked me off to the check-in for the flight back to Manchester. See, the MS had by now made it impossible for me to go anywhere alone - certainly not with only my little boy for support - but even then, I did not need anyone else. I refused to.

"Fiercely independent", or "stupid" - take your pick.

Once home, I discovered that my soon-to-be ex had turned off the heating for the house "by accident", which in April, after Las Vegas, my MS-raddled body found freezing cold. This necessitated a journey across country (roads have still not reached Lincolnshire) with my Mum, to retrieve my electric heater which I had lent to my friend some weeks before.

So anyway. Later that year - and yes, I do remember the date - my precious divorce became final. I can't tell you the relief. There wasn't, and never had been, anyone else, and that was something I never expected to change. Once bitten etc. Plus there was my stunningly attractive MS to consider. I had the house (still belonged to my ex), my son, my powered wheelchair, my excellent home-help, and that was it - my life was sorted.

I had purchased a computer on a "buy now pay February (1996)" deal. I put down £300, and it was duly delivered. My brother was an excellent source for tech support etc, and for one or two computer games as he worked where some were written. I had previously purchased a word processor and proceeded to write the first half of a story, which would have turned into a book - but the arrival of the computer put a stop to that ;). There was just so much more to do, for me, and my son - draw and paint programs, it played CDs, it had an encyclopaedia etc. After a couple of months, I did fall into the trap my brother warned me about - enormous phone bills, which I'm ashamed to admit he bailed me out on a couple of times. I had got online, and discovered chat programs, one of which was written by my brother, so I feel quite justified in blaming him . The human spirit craves interaction with other human spirits, and when you're online, no one can see the MS. This was in the dinosaur days of "BT", and calls were still charged per minute, and there was No Choice - BT or nothing.

In early 96, I had got my son to school etc and had gone online. This chat program was USA based, but was international. I got to know one or two Brits - the way they spoke was obvious, even in text. There was this one bloke who was at work - I had no idea where he worked or what he did but he was a Brit, and spoke my language;). When I went on the next day, I couldn't even remember the nickname he had used.

The chat program was new, young and quite patchy, and I might never have seen him again but, as I say, the Britness came through. Through conversation, I learned that this bloke was in Cheshire but had just got a job in London, and would shortly be going there to live....and the next morning, I, my son and neighbours on both sides, were rudely awoken by an horrendously loud thumping, banging and crashing at the front of "my" house. On investigation, this proved to be a large "For Sale" sign, being drilled and hammered to the front wall by a building society operative.

In those days, I rose at 7 every day, and this was before that. As soon as I could get hold of my ex, I did - boy, did I. It turned out he had had enough of paying the mortgage (£35 per week) on a house that he couldn't use, and by the way, there's someone coming to look round next week.

In other words, I was out on my ear. I, and my son, which is when I first began to have the sneaking suspicion of the real reason behind this sudden "eviction", but more about that later.

I needed a place to live. I scanned the local papers, asked everyone I knew, and even phoned the slum landlord acquaintances of my ex - nothing. I was at my wit's end. I even considered caravans, of which there are a profusion around there, but I very much doubted I could manage the step up into one, plus there was the wheelchair to consider. In the end, my home-help saved the day. She had seen a notice in the local post office, where someone was offering a house, to rent, in the village where we currently lived. It was a 2 bed. bungalow, but no address was given, so I had no idea where. I telephoned the landlord, then waited an agonising three weeks for him to make his mind up to let the house to me. During that time I got a bank loan to cover the bond and first month's rent, bought loads of cleaning stuff which I supposed I'd need (it's a female thing), and got lots and lots of boxes to continue packing my and my son's stuff.

I think about this now and remember people (my Mum, my neighbour) telling me that as my ex and I had been married I was entitled to half etc etc, but the simple truth was I didn't want to spend the rest of my life in a retirement bungalow in a retirement village which belonged to someone I loathed who could walk in and out as he chose, and did so; a situation which made me very, very angry, and which in turn made the MS play up, in ways I had never imagined.

So eventually, I did get the house. It was round the corner - not too uncomfortably close, although my ex sister-in-law did live next door. It was July, and it was hot. I had to call on my ex’s services, and his brother, to get all my furniture moved, but, any port in a storm, as they say.

A week or so before we moved in, I went round there with curtains for my son’s room. I opened some windows for while I was there then sank gratefully onto the kitchen chair I had brought. The front window was enormous and I hated the landlord’s choice of curtains, and quickly decided that I would swap them with the enormous green floral curtains (not my choice) in “my” bedroom, as it had a much smaller window. I noted with some annoyance that it was taking me longer to get around the house, and making me more exhausted than usial. I hauled myself up next to the sink, by the kitchen window, and looked out. The garden was overgrown and needed tending, but overall I was pleased. It was a sunny day, and as I looked my cat “Philomena”, who could easily reach here by way of garden fence-tops, and had been with me since before I had my son, leapt up on the window sill, and I grinned - all was good....untill I hung the curtains in my son's room, that is. It was a simple task and one I could do in my sleep, and it nearly killed me. Reaching up to the rail was difficult enough and I was finding it hard to breathe properly - the "MS hug ", which is a tight band around the diaphragm making breathing tight and short, was an affliction I still thought affected only me, was quite active that day. I lay on the floor on the dusty brown carpet, waiting to recover. And recover I did, after about twenty minutes. This is the way it always was, back then.

So we moved in. It was a hot July, and the total absence of all heating appliances didn't worry me unduly. I had a convection heater which I bought in a sale at Co Op at a very reasonable price, and which was on in my son's bedroom all night, and usually all day. I continued with this practice until I bought £40 of electricity on a Monday, and on Thursday night, in the middle of a phone call, it ran out. I still had the same home-help lady, and she fetched me more electricity cards the next morning. I spent twenty minutes on the 'phone to the electricity board being told that the heaters, lately provided by the landlord, were the worst kind for sucking energy and that the running cost of these was enormous blah blah. From then on, I used the one heater in my son's room, and that's all. I would go out all day anyway, in my wheelchair and enormous thickly padded ski jacket, and my son would eat his tea in the kitchen where the cooker had warmed the room, and eat breakfast in his bedroom, transported there, quickly and shiveringly, by me. As for me...I just wore a lot of clothes. At weekends, and on school holidays, we would eat out anyway. It was a very hot summer, and the house was very warm, but as autumn approached, then winter, the place was freezing. It was then that I found the place had no damp proofing, when I moved some furniture to reveal large swathes of black damp on the wall behind.

During my sojourn at that house I used my computer, a lot. Remember the bloke from Cheshire whom I met online, and had found employment in London and had moved there around the same time I had moved here? I discovered him online again, using that same chat program, but from a different part of England. He now worked at a London bank, and was therefore only online from home in the evenings. We spoke online whenever we were both on at the same time, and I must admit that, despite previously disparaging such things, I wondered if the attraction I felt was mutual, or imagined, or what. My then pc was a 486, a thing which actually does now still exist, but at that time was becoming slow and laboured. I had a 500mb hard drive, and I needed more space. On telling my online friend this, he informed me that he had a "spare" drive of the same size which I could have. I was very grateful, but despaired because I had no idea how to fit it. He said "I'll do it", and I said "Ok".

He arrived on Saturday 19th of October, in the afternoon, following a train journey up from London. I was very, very nervous, not having met anyone new at all since I first moved here. He was 21 years old - 10 years younger than me - unmarried, with no children, and I had only recently told him about the MS. I was in an agony of anticipation when I saw his taxi pull up outside the house...but I need not have worried. The conversation flowed between us without a pause, no uncomfortable silences, no mistakes which were not amusing, our favourite music and films corresponded, and we introduced each other to authors whom we might otherwise have never considered. In December of that same year he proposed and I accepted :). He knew about the incurable, untreatable nature of MS, and was appalled that I thought these things might put him off.

Meanwhle things went from bad to worse with my landlord, including incidents like him coming to the house to demand £25, which they had been charged because I had not paid the rent on a particular date - but not late - therefore putting him overdrawn (?), the hot water tank rupturing and soaking everything in the tiny airing cupboard, the previous tenants, whose little girl went to my son's school, not speaking to me but shaking their heads on my appearance anywhere in the village, the landlord constantly walking past the house pretending not to stare, and then, after Christmas, he came to the door. He ranted, he raved, and didn't basically say anything intelligible at all. He said my ex had told him things about me, that he didn't know what I was doing but he didn't like it, then he left, after telling me that he was going to be increasing the rent. That, and an incident outside the local shop involving my very ex slapping my face and trying to carry off my son, ending with me calling the police, again, and them visiting him and having a good old chin wag about "Women! What can you do?" etc, absolutely made my mind up that I had to go, leave, get out of there, before I went mad.

So, once more I had nowhere to go.
 

© Janey Roberts, 2001-2002

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