Somehow, between Montenegro and Greece, it seemed all ideas of giving Monte away to some kind people had evaporated. We crossed into the Hellenic peninsula on Sampson’s 51st birthday and I think he felt the universe had given him a puppy.
It was the first time in 20 years I’d been too ill to write him a birthday poem. At least I had bought him a present before we left SA: Barbarian Days – A Surfing Life by William Finnegan. It was supposed to carry him dreaming across the desert, surfing vicariously through the stories until we could make it back to the waves.
As we approached border, we were ready to brazen out the fact of Monte sat on a towel on the floor at our feet with a “found this starving puppy, on our way to the vet now”. But Greek officials were far too busy taking apart a car stuffed full of luggage driven by a chancer in aviator shades and excessive gold chains to worry about us.
Sampson celebrated with pack of 12 birthday choc ices from Lidl and passed several of them on to little girls in the waiting room of vet Sophie in Ioannina who lanced and drained Monte’s swollen joint (infected from another dog’s bite) and provided worm tablets, antibiotics and special intestinal treatment dog food. Which gave him even more spectacular diarrhoea….
I fell asleep before the lights were turned off, forgot to clean my teeth even, and woke up freezing without my sleeping bag on. It was increasingly wintry. The temperature inside was not helped by Sampson getting out twice to relieve Monty. Twice he didn’t make it in time. Lucky had taken to sleeping next to me. I woke at 8, but it was so cold, I got back into bed for an hour until it was warm enough for me to venture out. There was mist on the lake outside. The boys had porridge for breakfast and I made a gluten-free version: stewed pears and raisins with ricecakes crumbled into it.
* * *
So how did I get M.E.?
I was brought up in Coventry, an industrial town in the middle of England, and sent to a fee-paying high school that for centuries had been a sausage factory to shape up the lazy-ass sons of the mercantile classes for redbrick university entrance. My parents were teachers in the state system and made huge sacrifices to give me a better education. Five of my original class of 28 got in to Oxbridge.
Girls had been accepted so recently that my first year marked the inaugural appearance of female pupils in the 6th form. They didn’t need the same kind of pressure putting on them as the majority slacker boys but no one had worked that out yet. I knew what it cost my family every day to send me there – so I never took a day off in seven years. I left school with a bristling array of qualifications, a bad habit of staying up very late to write essays and the capacity to completely ignore all symptoms of ‘flu.
Coventry in the 1980s was vying with Newcastle for the title ‘Murder Capital of Britain’. It had massive unemployment due to the closure of so many of the Midlands’ car factories that my grandfather had worked in. You know that song Ghost Town by The Specials? They were from Coventry. The city centre could be a violent and dangerous place on drunken evenings, especially for teenage girls. I had to wait for my younger brother to get tall enough to escort me before my parents would let me go out dancing to House DJs at The Dog and Trumpet on a Saturday night.
I survived the sublunary dullness of my school years thanks to a couple of inspiring and committed teachers and the opportunity to get involved in acting. I even performed Shakespeare as part of the school’s first production at the Edinburgh Festival. After a gap year working in London at a women’s magazine, I went to Oxford to read English, keen to pursue a career in theatre and writing and looking forward to getting involved in as much drama as possible.
But the drama that dominated my life there was far from the thespian type I’d been anticipating. University College is Oxford’s oldest. The year I arrived, 1988, men had been studying there for 739 years. Women undergraduates had been allowed across the hallowed portal only 9 years before and made up 30% of the student body. There was one female fellow.
My first weekend, I was asleep in my single room at the top of the building very late on a Friday night when the 2nd year lads who shared a suite nextdoor came back from the bar with a few mates. One of them was the new Beer Cellar president and had obviously been treating his pals to a few afterhours drinks. They were so rowdy they woke me up, for the first of a hundred times that year.
I phoned my boyfriend from the landline in my room to witness the level of noise – he was a jazz pianist, at work in Covent Garden – and he told me to lock myself in. When my neighbours and their guests progressed from banging on the wall to banging on my door I got concerned that the latch was pretty old and looked round for something to defend myself with. It was when I caught sight of myself in the mirror with a serrated little kitchen knife in my hand that I got angry: what the hell was I doing? How had I been reduced to this?
I only found out this was ‘Fuck a Fresher Week’ afterwards. A whole rash of incidents had taken place that weekend. What happened to me was – and still is 30 years later – entirely unremarkable. The boys were quietly reprimanded by the Junior Dean. I was treated as a trouble-maker for making such a fuss. That was week one.
In the third term of my first year, I was elected college Women’s Officer; I spent most of my second year fighting for justice for rape survivors within college and negotiating Univ’s first Code of Practice for Sexual Harassment. I was subsequently elected Oxford University Student Union Women’s Officer (the last time it wasn’t a sabbatical paid post) and in 1990 carried out the first university-wide sexual harassment questionnaire. The damning results were published in The Sunday Observer the week after Thatcher resigned.
For about 18 months I slept an average of 4-6 hours a night, and almost never the night before handing in an essay. We were set three a fortnight in our second year, on subjects such as the History Plays or the entire works of George Eliot (one of the very few women on the syllabus). Anxiety and eating disorders amongst my fellow female students were rife. I still thought I was superhuman and could cope. Sickness was something that happened to other people.
The second term of my final year I went down with glandular fever (mononucleosis) with a blood test showing evidence of Epstein Barr virus. The doctor recommended I drop out to recover properly and take my finals the following year. But I didn’t want to spend a single second longer in that place than I had to, so I carried on, pushing through my exhaustion as always.
That summer I escaped to London, eager to pay off my student debt and earn some money to take a year off to travel.
* * *
Sunday was gorgeous but my energy was drained by the first day of my period and I was not up to walking. I sat with Monte while Sampson went for swim and watched Zola bounce out the truck and back in for his goggles. I love how the sea turns the teen into a keen bean again. Zola spent the morning washing his clothes while Sampson did some serious lying down recovering from his third month in a row up all night with a needy baby.
I weighed my options up carefully and decided that, sadly, the cold wind was going to come up too soon to justify the extra effort of setting up outside, so I lay down on the bed instead. I edited till 4pm then dragged myself up to chop a pile of veg for supper. Birthday boy had no idea what the cooking cost me. Finally I had a shower while the pot simmered – I hadn’t even managed a wash that morning.
My Sunday night movie treat was half a pomegranate. I love pomegranates. There’s something so intense about the ruby redness of their jewelled seeds, the juice explodes on your tongue like distilled summer heat; it seems to give a huge vitamin C boost to my system.
There was a storm the next day, so it was wet but warmer. It was stupendously tiring to have to drag so many clothes on, but once I was strapped in to jeans, socks and walking boots I felt more capable. Zola was in a great mood and we zapped through school.
In Preveza, Sampson tracked down another vet, who was willing to do the pets’ innoculations even though they were not yet 3 months old, because jabs needed to be done 3 weeks before our flights.
He came back with a collar and lead, and special expensive dog food. When I queried his assumption that we were keeping Monte, my husband said, “But we agreed”. I didn’t want to row in front of Zola but felt it was time to point out that an exhausted silence does not equal acquiescence.
* * *
In Jan 1992 I set off with a friend to volunteer in Bangladesh for a few months. I had an amazing time and travelled marvelling on through Nepal, India, Thailand, Malaysia and Indonesia. In Sumatra in July all seven of us on a trek went down with dysentery. But I was the only one who never recovered.
I pushed on through Hong Kong and across China and Russia on the Trans-Siberian Express to Prague where I ran out of money and got a job teaching English in a middle school. I was still so ill, I went to hospital and was given anti-giardia medication for a second time.
But I continued to be constantly exhausted and feverish. By December I was coming home at 4pm and falling asleep at the table. I had had diarrhoea for six months and was feeling increasingly weak. I had purple welts on my thighs and cheeks like an AIDS patient. I couldn’t speak enough Czech with doctors to find out what was wrong with me. Finally, I gave in and got a coach home to Coventry for Christmas.
It took another year to diagnose. The first round of tests – including a barium enema – found nothing wrong and I was told I just had IBS. I resolved to pull myself together, packed up and set off to Manchester in the spring to start a theatre company with my best friend from college, who’d been at drama school training as a director in my absence. It was the life we’d dreamed of, in a city full of excitement and opportunities. I felt full of optimism for the future.
But I couldn’t get out of bed in the morning. My energy, which used to be boundless, was unreliable and sometimes absent altogether. My Mancunian GP ran more tests, found I was seriously anaemic and insisted I stop being vegetarian. But even forcing down liver did not restore my capacity. I found myself crying outside the supermarket because I didn’t have the strength to walk home with 2 bags of shopping. I was 23 years old.
As winter came on, it got worse and worse. I was sleeping 12-14 hours a night. I would wake to find clumps of hair on my pillow. I had constant nausea and dizziness. Worst of all, I couldn’t think straight; I struggled to read and I couldn’t write. When I told my young GP that I had been unable to get a lump of Blu-tack/Press-stick off the wall because of the pain in my hand she took a deep breath and said, with obvious reluctance, “I think you may have M.E.”
M.E.? I’d never heard of it… Was it something really serious, like M.S.? She couldn’t tell me anything apart from the fact that this was a possible diagnosis if, after 6 months and all other tests proved negative, post-viral patients were still ill with unexplained pain and fatigue. This was Before Google, so I went to the library and found a book, written by a doctor with M.E. And there it was, a comprehensive list of symptoms laid out before me. I had every single one of them, even the ones I hadn’t realised were connected, like noise and light sensitivity. It explained that M.E. was characterised by post-exertional malaise, pain in muscles 24-48 hours after doing even light exercise. It told me that the only way to avoid it was to do half as much as you thought you were capable of. Except this was impossible, because your capacity and limitations shifted daily.
The book said that a particular type of person tended to get M.E.: those that don’t rest when they’re tired or sick but push on through. This means a disproportionate amount of sufferers are women, who often have no choice but to carry on for the sake of their children. It also said 25% of patients recover spontaneously within 2 years; those that don’t reach a plateau of symptoms between mild and moderately affected; the severely affected remaining 25% end up bed-ridden in darkened rooms.
Even though the prognosis was bleak, I was ecstatic. It was a huge relief just to know I wasn’t going mad and I wasn’t alone. But if this disease was already known about and documented, why on earth had it taken 18 months for someone in the medical profession to mention it to me?
I soldiered on but by November I was crippled with arthritic pain and brain fog. The only time I was warm was when I’d just stepped out of a hot bath. I couldn’t push through this time, I wasn’t able to look after myself anymore – my brother was having to interrupt his studies to come round and cook for me. For the second Christmas in a row, I gave up and went back to Coventry.
* * *
We parked off by the deserted Castle of Christ Pantokrator in Preveza. I set off slowly to explore; Zola overtook me on his unicycle.
Sampson was up twice in the night again with Monte and I didn’t get back to sleep in between. After dawn I dreamt that I was a small child and had two toy dogs that came to life: their teeth started snapping at my hands as I was feeding them. I woke feeling so much worse than the previous day despite my attempt to fend off the effects of the cold by sleeping in my sheepskin hoodie. Today I had second degree malaise, a horribly stiff neck, debilitating spinning nausea and pain in my arms and hands from typing yesterday. It was a huge effort to sit up, an hour to come round enough to stand, two hours to complete the process of getting up.
Meanwhile Sampson went for a surf. There was hardly a wave but a good paddle miles out the back is always good for his head.
I knew which way the wind was blowing. After he came back in and had eaten ravenously, I sat down opposite him and said,
“Look, the day we found Monte, remember I said we couldn’t possibly keep the dog as well as the cat? I have Not yet agreed to take on another (potentially huge) child! Lucky is 2 months old today and I haven’t slept through the night since she arrived. I will not be besmirched as somehow lazy for not picking up puppy poo in the small hours when I didn’t sign up for this.
You leave me no option but to spell this out: I know I physically can’t do it and I shouldn’t because keeping the dog means a significant risk of relapse for me. With temperatures as low as they are, I have no buffer as it is. This is the time I should be focussing on building up my strength ahead of the huge hurdle presented by the demanding admin tasks and physical crossing to Egypt – with the added stress of doing it all without the guaranteed safe food and rest provided in the truck. The only way I can get through this is if I can sleep enough to save up enough energy to cope with the challenges. But with you getting up every night and waking me, my insomnia is getting worse not better and I feel like I’m on a very slippery slope.”
The risk of disabling me when my skills were most needed was crazily obvious to me, but my husband seemed willfully oblivious. Never mind the expense or inconvenience of a big dog in a small space or the commitment of hours of training time ahead. He was adamant I was exaggerating, even scoffing at me, confident with Zola on his side. Our son was remembering fun times with Mia in the summer in France – they both wanted to keep Monte. I wanted to keep him too, and felt so angry to be put in the position of killjoy. There was no one else to stand up for looking after me; it would probably not even have been different if Ruby were with us, she loves animals so much.
I asked Sampson, begged him, to carefully consider the consequences of taking on another newborn when I was already in so compromised health, when we had the most challenging border crossing yet ahead of us, as well as Ruby on her way for a precious holiday.
Reader, he chose the dog.