I’ve had an interesting life. It’s just been ordinary, in that I’ve not achieved anything great, but ordinary in an extra-ordinary way.
As a young child I was what would be called these days “gifted” which, coming from a working class family, was challenging. I knew I wasn’t like other kids, and on top of my academic ability I was also creative and artistic and highly sensitive emotionally. It made friendships with my peers difficult and half the time I felt like my parents’ alien child.
When I was growing up divorce was a relatively new thing, and I was the only kid I knew whose parents had split up. My Mum’s second marriage was turbulent (and 40 years later still is!), the consequence of which was that I spent my teenage years clinically depressed. Mental health problems weren’t recognised in children in those days, however, and I just had to struggle through waking up each morning wishing I were dead. I ended up seeing a great Psychologist when I was 19 who turned my mental health around.
I married an emotional bully, who I thankfully divorced when I was 22. Children who have chaotic lives often make poor relationship choices as adults. I then developed ME when I was 26, which became very severe after I contracted meningitis. After several bedbound years I started to make a degree of recovery and am now moderately affected. Most adults who have a very severe form of the disease remain largely bedridden and I can count on one hand the people I’ve come across over the years who were as sick as me yet have made the degree of improvement I have. It’s a mystery, but one for which I’m hugely thankful.
Of course, in my forties I discovered I’d been born with both Ehlers-Danlos and Mast Cell Disease, two “rare” diseases which no-one had ever heard of and for which I receive basically zero treatment. Looking back it’s been a lonely journey.
I’ve wanted to write a book about my experience with ME for some years now. As I mentioned, most adults with the severe form of the disease don’t recover enough to put pen to paper and our stories are never told. While I’m not taking anything away from people who have milder forms of the disease, moderate ME and severe ME are like night and day – I know, I’ve lived with both. My plan, after completing my ME book would be to write another novel about my early years and mental health issues in children – we hear little about it and even less from kids from poor families, who often lack the level of education needed to write a book about it. And if I live long enough, I’d love to do another book chronicling my battle with EDS and MCAD. Looks like I’m going to be busy then 😉
I’ve made a start on my first book. I can pinpoint the day when my journey with ME began, and it’s weird looking back remembering all the things my brain has chosen to forget. It’s also peculiar remembering the 90s and the fact there was no internet or satellite TV, let alone mobile phones and text messages – how on earth did we ever survive? 😉 It’s also hard not to fill the entire book with negativity – seeing in black and white the lack of care and help I’ve received is really quite depressing. But, depressing or not, that’s been my journey and you all know I’m not going to sugar coat it and turn it into something it’s not.
I’ve just finished the first chapter so have a long ways to go. I can literally only write a paragraph a day, so don’t hold your breath for this book to be finished, but I thought I’d share odd bits with you as I go along. It may never be completed, or see the light of publishing day, but at least it will be written down and my struggle – our collective struggle – won’t go unrecorded. p.s. John was my BF when I got sick.
I arrive early for Christmas tea at the farm, knock on the heavy red door and walk straight in to a short hall struggling to keep control of a jumbled mass of wellies, coats and trainers. I can hear murmuring voices coming from the lounge and stick my head in to find John chatting animatedly to his Dad, Mike, and three brothers. The youngest, Phil, is tall and sporty and I liked him immediately although at fifteen he’s still at the age where he thinks girls are scary. In contrast, John’s middle brother Tim is shorter and stocky and looks like he’s not related to the rest of the family. He’s the most outgoing and fun of the brothers and has a permanent twinkle in his chocolate brown eyes. Then there’s dark, handsome Mark, who will one day take over the farm and who’s made it clear that we will never be friends. His girlfriend hated me on sight, ignored me from the day we met and Mark has followed suit. I’ve haven’t said or done anything wrong to either of them and am hurt and confused by the whole situation, but even more upset that John hasn’t come to my defence and tackled them about it. We tread warily around each other and try not to make it obvious that we don’t speak.
‘Happy Christmas all’.
‘Happy Christmas Jaks’ chimes everyone but Mark.
‘Is Jean in the kitchen?’ I don’t need an answer, because after single-handedly cooking lunch for six and now preparing supper for ten the poor woman has probably been stuck in there since the crack of dawn. ‘I’ll go and give her hand, see you in a bit’ and I wink at John, pulling the door to against the icy wind which snakes along the hall carpet defying all attempts to keep it outside where it belongs.
I make my way through the long, narrow dining room and past a festive table groaning with food to find Jean washing lettuce in a kitchen lined with battered 1970s units and warmed by an ancient cream Aga.
‘Happy Christmas Jean’.
‘Oh, it’s you’ she snaps, sounding harassed. When I first met her I have to admit I found John’s Mum scary, but when you get past the fact that she barks like a Sergeant Major she’s actually really nice, it’s just that like most farmer’s wives she’s had too hard a life to have any soft corners left.
‘Is there anything I can do?’
‘You can make a fruit salad. Just use what’s in that bowl there. Then the brandy snaps need filling and that should be it’ she reaches down to lift a bowl of frothy white cream from the fridge and places it next to me on the worktop. ‘I’ve made you a quiche for main course, is that alright?’ Having to tell a bunch of farmers that I’m vegetarian was tricky and they initially treated me like I was on day release from the local asylum but after eighteen months they’re at least used to the idea, although they do still secretly think if I just tried a nice slice of beef tenderloin I’d be cured.
‘Thanks Jean, it looks scrummy’ I reassure her, although I’ve been feeling queasy since lunch and the mere thought of eating makes me want to gag.
As we chat about what we’ve received off Santa there’s a flash of dazzling light through the window and the sound of slamming car doors echoing round the cobbled yard announces the arrival of the three remaining supper guests. John’s Uncle Andy is a confirmed bachelor who shows Limousin cattle, then there’s John’s widowed Grandma who lives in a bungalow up the road and the local Methodist Preacher who is also a close family friend.
‘Go and see to them’ I remove the teatowel from Jean’s hand, ‘I’ll finish off’ and I dry ten floral patterned teacups ready for our post supper brew.
Eventually we’re all seated at the table but after we’ve held hands and said Grace I can only pick at my food because I’m feeling ever more nauseous and each fork full drops into my stomach like a brick. I hope no-one’s noticed that I’m eating like a bird and I’m thankful when the meal is finally over and we all gather round the lounge fire with paper and pencils to play Guggenheim, which Mike graciously wins as he’s the only person who knows the name of a British town beginning with the letter V.
John and I are sitting cross-legged on the floor, leaving the sofas for the grown-ups, and I lean my head on his shoulder, inhaling the warmth of his smell which is a mix of Imperial Leather soap and apple shampoo. I love Christmas night at the farm. For most of my life there’s only been my Mum, Step-dad and me at home and I’ve sometimes longed for the large family dinners you see on the telly, with playful banter and dishes being passed round the table, followed by party games which last well into Boxing Day. And here I am. If only I’d known that my world was about to slowly implode, and that these laughter filled hours were the last in my entire life that would ever be normal, I would have clung on to every second like a drowning man fighting for his final precious breath.”