Playlist wars

At Christmas, like many other families, we had Spotify playlist wars.  Would it be worth investing in their friends and family package, or does everyone quite enjoy moaning about my Jazz-Folk fusion?  We are lucky to have it on multiple devices on three floors, but is there any fair way of deciding who gets to play what when?  As things stand it’s a question of who shouts the loudest, so J’s tunes never get any airtime.

When I’ve had a few drinks, I have been known to proselytize about ‘80s pop with tracks to support the case.  Or demand the Speed Garage classics that remind me of cruising around London in my Saab convertible in the ‘90s.  My husband thinks that I should be able to wait my turn.  He remembers what it was like to be a teenager wanting to hear the same song over and over again.  Accordingly, A has the right to insist on Shawn Mendes or Eminem when the mood takes her.

Eminem; ‘Bitch, I wrote Stan’

Shawn Mendes; ‘wholesome as apple pie’

My husband’s playlist is short and unrepresentative of his character as he had neither the time nor the inclination to work on it.  I made him one as a 50^th birthday present but never got to hear it at his party.  Many of his guests brought playlists then argued with each other, like the children do, about whose turn it was.  I kept asking him to assert his authority but he refused to get involved, which was very grown-up of him.

I’ve been to a few parties during the festive period.  ‘Fairy Tale of New York’ by The Pogues is the only song that everyone is always happy to hear.

When A was at football the other day, I let J play the Barden Bella’s version of Britney Spears’ Toxic from ‘Pitch Perfect 3’ multiple times, which would be bad enough if J played the song all the way through, but he has a short attention span.  Like all the children I know, he can’t listen to a whole song.  I used to be worried because they wouldn’t listen to albums, but now, getting them to listen to a three minute pop song without going back to the beginning or skipping to the next track is a challenge.

I’m disappointed to see that J’s taste has become quite mainstream.  I used to be in a Folk choir and J always came to my concerts.  He always sat in the same place where I could see him from the back of the back row, and his presence was very encouraging.  I can’t sing very well, but as long as J was there I felt like a Folk legend with a voice like a dulcimer.

Not for the first time, I was proud of J’s sophisticated tastes.  We went to a few Folk gigs with my choir friends.  J was always the youngest person there by forty years and he wrote a fan letter to our inspirational choir leader.  We made a CD, ‘Twice Good Morning’, a year or so ago, which J played every night before he went to sleep.  His favourite song was Bedlam Boys, the thrillingly inappropriate 16^th Century song about madness.

‘To cut mince pies from children’s thighs
With which to feed the fairies..’

I stopped going to choir a couple of months ago when I couldn’t keep up with managing the homework or the logistics.  It didn’t happen overnight, but rehearsals became more difficult.  We learned our parts by ear, and the songs started slipping away.  I asked J if he wanted to come with me to the choir’s Christmas concert ‘A Festive Gathering’ at Cecil Sharp House for old-time’s sake.  He agreed, then changed his mind a couple of hours before we were due to leave, ‘It’s going to be so boring.’  ‘We can leave after the interval then,’ I said.  It was pouring with rain, but we made it there in time.  Mercifully, there were no Morris dancers in the programme this year, but J wanted to leave before the interval.  It turns out that he only liked the choir when I was part of it.  He is a fan of me, not a fan of Folk.

It occurred to me that he may not be a ballet fan either.  I keep taking him to The London Coliseum to see classical ballets performed by the ENB.  He always wriggles…why wouldn’t he?  There are ballets aimed at children but we feel patronised by the publicity for them.  It might be time to reassess: if he can’t sit through a TV programme without fidgeting, why am I subjecting him to Giselle?

English National Ballet – Giselle

My brother let me play my playlist when he visited on the 30^th, but I wasn’t forcing him. When we were growing up, Bob Dylan was the official soundtrack in our family home, and Daniel’s surreal records were tolerated but not encouraged.  I found Frank Zappa so annoying that I tried to argue him out of it.  On one famous occasion, listening to Baby Snakes by Zappa actually made me cry.

My father Murphy didn’t like music apart from The Swingle Singers and some Smooth Classics like Beethoven’s 9^th and the Hallelujah Chorus.  We were all surprised when my stepmother chose Elton John’s Rocket Man for the committal at his funeral.  Reflecting on it now, I think the incongruous effect was (unintentionally) Murphyish.

I’m proud of my current playlist which is eclectic and inclusive.  There’s something for everyone.  It would have taken 35 hours to play it from beginning to end, and I was ready to stay up all night when Dan was here.  But it wasn’t New Year yet and he was trying to pace himself.  He was an appreciative audience – he kept asking what the songs were — but we ended up agreeing to disagree about Folk.  Number 6 on my playlist is ‘Lovely on the Water’, the Steeleye Span version of one of my choir songs.  But Dan hates Folk and I was happy to skip to something more Danielish.  I’m pleased to say my taste is no longer enforceable.

Human, all too human

I went to an interesting talk yesterday with an old school friend, but bolted in the break rather than talk to anyone. Salon London holds monthly events at the Hospital Club in Covent Garden.. This one was pegged on ‘Technology and Feminism’. The speakers were fascinating but I was glad to have been stationed by the exit. I used to love this kind of thing, but I’ve lost confidence and a sense of who I am. Without a project in the foreground of my life, I feel that I’ve got nothing to talk about.

I’m also painfully conscious that I look less enthusiastic than I feel. My expression is mask-like, with a perpetually turned down mouth like a gloomy emoji. Walking to the tube station in the rain, I wondered if it would be possible to think differently about my illness. It would be sensible to focus on the things I can do rather than the things I can’t. Even more radically, I could take an interest in my altered state, rather than constantly comparing the ‘HD me’ to the ‘old me’ and falling short.

People keep saying, ‘you are not your illness’, when they’re trying to inspire me to write about something else. My friend suggested pitching an idea I’d had about the sexual revolution a few years ago to ‘The Observer’. It’s hard to explain why I wouldn’t be able to write this now even if they wanted it. I wish this wasn’t the case and feel a terrible sense of loss. No longer a journalist, I’m writing more truthfully but for a smaller audience. This has been a difficult adjustment. I’m envious of my successful friends, particularly those who have managed to continue without selling out.

I have struggled to keep the intellectual show on the road but it’s getting harder. My upbringing led me to believe that having a family was less important than having the freedom to think. My mother Susan was a feminist and a reluctant executive wife; a reader rather a creator. We loved the Bronte sisters – Emily was our favorite. There are pictures of me outside the parsonage in Haworth aged about 11. Another childless Emily was my heroine at university. I wrote my dissertation on Emily Dickinson. My mother was never happier than when I had a newspaper column in the ‘90s, but I wasn’t. I was a perfectionist, performing opinions that never came naturally, and incapable of drafting my pieces. An hour before the deadline, with nothing on the page, I used to ring Susan in tears and beg her to help me, which of course she couldn’t. She died in 2001, before I met my husband. If she’d got to know her grandchildren, would she have fallen in love with them and forgiven me for my nuclear family?

My child-less heroine’s home

The truth is, like it or not, I am HD. Unlike other serious illness, HD occupies your being; changing your personality and thinking. This feels like an attack on your identity, and for the past few years I’ve seen it as an assailant that I have been battling with.

I’ve read a lot of illness memoirs for business rather than pleasure. Before I was ill. I was fascinated by the genre. Some were strangely boastful, alienating this reader. I toyed with the idea of writing one myself but this blog feels like the right form. However dramatic my story I couldn’t compete with The Observer’s former literary editor‘s account of his year off work after a stroke. Salman Rushdie hasn’t visited me, and isn’t going to.

Is there something to be learned from my experience? Does awareness of my mortality make me wiser than my friends? I feel I’m at a crossroads. My skewed perspective might tell me something interesting about ‘normality’. Instead of mourning the destruction of my identity, I want to celebrate my regeneration into humbly human form. It might sound clichéd but after years of gruelling psychological work, I’m on the verge of an awakening. I say on the verge of one; it hasn’t happened yet but I’m on the right path at last. With fewer people looking at my work, I’ve been released from the burden of perfectionism, which stopped me from expressing myself. My narcissism made me feel immortal; I have been knocked down from my pedestal and I’m more in touch with other people than I have ever been. My family have all noticed that I am hash-tag relatable. I’m determined not to waste any more time regretting the past. I want to be fully present for my family rather than being half there with them and half wrapped-up in thought about my intellectual grand designs.

I googled ‘illness and identity’ and came up with a website called ‘Existential Medicine’, where Marxist existentialists gather to criticise big Pharma and take issue with the bio-medical paradigm. This discourse is recognisable to me as I did an MA in critical theory. Although it’s hard for me to read off the computer screen, Peter Wilberg’s essay, ‘Illness and Identity; the Immune Self and its Defences’ promised a different way of thinking about ‘the illness process’. He says:

‘What I call the illness process begin with “not feeling ourselves”, but rather than leading us to feel another self, leads us instead to feeling something other than self, or not self, “getting at us” or making us feel bad or ill. Completely ignoring the meaning to be found in a new and previously “foreign” sense of self pervading our bodies, medical science looks only for the cause of the symptoms in some sort of “foreign body”, for example in the form of a virus or cancerous tumor made up of non self cells.’

For the people close to us, the challenge is to love the ‘other self’ and not wish we were otherwise. I will think about my predicament as an existential crisis through which it might be possible to chart a way. This is going to be difficult work, but I will set about it.  I want to find meaning in my all-too-human story.

http://www.existentialmedicine.org

 

Only connect

Until recently, I didn’t want to see anyone else with HD. Sometimes it was unavoidable. My six-monthly check ups at the National Hospital were difficult; the waiting room was full of people in wheelchairs in the late stages of the illness with stressed-looking carers or family members. I felt so sorry for them and sorrier for myself. This vision of my future was confronting, so I kept my eyes down, reading and re-reading the news pages of the Metro free-paper.

I’m not sure what has happened but I’m less scared now and more interested in fostering open communication with people like me: people who understand the challenges of living with HD and the momentous effort involved in keeping-on keeping-on.  I want to share my experiences and hopefully learn from theirs. Few people have HD, and it feels foolish not to reach out to them. These days, in various ways, I have been connecting with the HD community. I’ve also been feeling more sociable. I’m still nervous of kitchen-table encounters because the rhythm and content of my conversations has changed, but the reward of connection outweighs the risk. I’ve never been good at telling anecdotes but I always liked talking about ideas with a cocktail in my hand. Yesterday, I’m ashamed to say, I forgot the word for woman-hating. I said ‘misanthrope’; then ‘The one that’s against women’.

At lunchtime on the second Thursday of every month, I go to a small but easy-to- locate café in Islington to meet other people living with HD. The group is convened by the North London branch of the Huntington’s Disease Association. It used to be held in a community centre but they put up the rent. It’s a bit cramped in the Corner Café and the number of people attending the meeting varies from month to month. It’s also a bit inhibiting to be in a public place when we are telling our stories. Last Thursday, there were five of us around the table; some familiar faces and a couple of new ones. The group is led by Graham, whose job it is to send endless reminders in advance of the meetings. He always gets there early in case someone else does. Graham’s wife died – I’m not sure when –  but he has stayed in post. More than an administrator, he has a real talent for making us all feel comfortable, facilitating conversations that always feel meaningful because communication is hard won. Graham said his wife didn’t utter a word for years and he wasn’t sure if she was taking anything in. He talked to her, as we used to talk to my father, slightly self-consciously about the past and what their friends were up to. Every couple of days, he wheeled her around the garden they used to tend together. Then one day, when they were passing the flower bed, she said ‘golden rod’, which, like my daughter’s first words, would be remembered forever.

We are introduced to M who had travelled quite a distance to be there. He is worried about his first appointment at the National because he can’t speak very well and there’s a lot to say. I was surprised to hear that he’d only just been referred there by his GP. M had a wonderful infectious laugh. I was touched by his curiosity about my life, haltingly expressed. M asked about my father and when was I diagnosed with HD. ‘How old are your children?’ And, just as importantly, ‘What drugs are you on?’ The cocktail of medications which saw off my depression and made me more equable aren’t usually prescribed together. My specialist added Olanzapine to the mix, an anti-psychotic that stopped me from punching doors. Like Graham’s wife, I also had trouble sleeping, but Olanzapine and Zopliclone have helped, and we wrote the names of the drugs on a scrap of paper. Graham thought it would be better for M if someone came with him to his appointment.

The meetings are great but I’m tired when I get home. Writing is easier than speaking. I was pleased to receive an e-mail from P, a woman with HD who identified with my blog. Like me, she hates speaking on the phone, but longs to communicate however she can. By e-mail, we have talked about meeting up. We are both poor travellers and live some distance from each other. In the meantime, we have been writing backwards and forwards. She writes vividly and precisely about a childhood overshadowed by HD. My father had a late-onset HD, so he was very much himself when we were growing up, and I’m very grateful for that. Her mother had it, but nobody ever explained to her why her home wasn’t full of love and laughter like the homes of her friends.

My children did know why I was behaving so strangely, but I was anti-social before I became symptomatic. For the past few years, our family home has felt like a battleground. Before that, it was subtly socially selective. A few carefully-vetted feminists who shared my world view were allowed across the threshold, but the parents of my children’s friends were never encouraged. There may still be time to turn this around. I want Christmas to be the start of a new era where everyone feels welcome here, including my husband’s large extended family and my Christian cousins. My mother loved talking to people but never invited anyone round, which was weird now I think about it. She was shy but it looked like disdain. Or maybe she was disdainful. It never occurred to me to wonder why she didn’t have many friends because she was so hospitable to mine. Our front room in Brighton was full of chain-smoking Goths, not grown-ups.

My correspondent P has been thinking through various Christmas scenarios. She lives on her own; she has separated from her husband; and her children are older than mine. She gets on with one of them but her relationship with her other child has broken down. I’m worried that she doesn’t have enough help or company. She is in a new town and has no carers. She says she doesn’t have the energy to go to Social Services as she still appears to be well. It’s hard to convince them that you need help with basic tasks. I remember going through this myself, but I now feel so grateful for the infrastructure around me as it allows me to make the most of my life. I am picking up the children every day and although I can’t be much fun with them, my husband has recruited a creative teenager who grew up in a house with no TV and she can doodle for hours with my son J without getting bored.

I was pleased to hear that P’s son will be visiting her over Christmas, and they are going out so she doesn’t have to cook. Like her, I have been planning my Christmas outfit(s). I might do the Santa Dash around Victoria Park to raise money for the HDA. You don’t have to walk but you must dress as Santa. I want to go as an elf.

 

The Last Great Raven

A and J have been asking about my dad. They never get bored of hearing about his unfinished opus ‘The Last Great Whale’ and other running jokes, which have been carried over to my family more or less intact. ‘I’m going to finish “The Last Great Whale”’, Anna said yesterday.

My husband says it’s already finished. The first and last lines are Haikuesque.

‘Immense, serene, the baleen whale,

Seeks for an echo of its kind.’

Murphy died last October from HD complications. Our old family friend Julian, Murph’s business partner, drove me to his nursing home in Henfield every couple of weeks. On the way down, he told stories about Murph, which I had never heard. He is the custodian of our memories because Murph didn’t ever speak about the past. Julian said Murph was good looking and charismatic when he came across him in Earls Court in the late ‘50s. He described so many seamy pubs full of disreputable characters, some of whom came to tragic ends. It sounds like ‘Hangover Square’ by Patrick Hamilton,

Murph was an Agony Aunt for ‘The People’ Sunday newspaper, was a short-order cook in a snack-bar off Piccadilly Circus, then had a window-cleaning round, which paid the rent, before becoming a journalist. From what I gathered, he was out of synch with the Spirit of the Age and proud of this. He never took drugs or went on demos! And he thought Bob Dylan couldn’t sing. In spite of this, my mother pursued him. They ended up living together in a flat underneath Donovan, and Murph was always complaining about the noise.

When Daniel and I came along, he stepped up to the plate and set about providing for us by any means necessary. I’m never sure when he acquired his BBC voice. Did he lie on his CV to get his first job? I think I remember him telling me this, but I’m not sure. There was no Old Boys network for Murph, he was a self-made man.

 

Early, Sir

 

I have been told that he was one of the Founding Fathers of Duty free, and I’m not sure what to make of his leading role in this not quite ethical industry. In the early days, it was like the Wild West, full of chancers, boozers and larger-than-life characters finding lucrative opportunities around the globe. I’m sure it has changed now, like journalism, with everyone coming to work on time without hangovers.

Anything to declare?

I miss him terribly; our numbers are dwindling. The Australian wing of the family visits infrequently. There are very few Ravens left in the UK and we are in danger of extinction. My brother doesn’t have children and probably won’t, although he is a brilliant uncle. My mother wouldn’t let us see our Christian cousins when we were growing up. These days, I am more tolerant than her, but I don’t have a relationship with Zoe or Andrew. At the same time, my husband’s family is multiplying. I’m losing count of all the cousins.

What can I say about Murph? He was an enigma who never gave straight answers to any questions. His real first name was Vivian! That always sounded weird when I heard it and I never called him dad. He was always Murph to me, but we never worked out where the nickname came from. He said something different every time he was asked.

M was a great grandfather and more patient than me with A and J when they were toddlers. He never got bored with boring games. I can picture him and Anna in the garden of our family home in Brighton opening and closing the electric garage door again and again. The teddy bear he bought her is still on her bed, J doesn’t know him very well and I’m so sad about this, but he knows all about him. A has fond memories of holidays in Florida and ‘Murph the Surf’ as he styled himself in his gated community days. We never liked this holiday home, which was on a golf course with an artificial lake to look at, but M didn’t care what we thought, he liked watching the pelicans and waved at the seniors in golf buggies as they went by.

He was a funny, warm and a generous father too. I think he was surprised by how much he enjoyed having us. [He did tell me this] When we were small we spent magical weekends with him in London, magical because different rules applied. We were always getting lost but he had a special whistle and usually retrieved us. I can see him skimming stones across the lake in Kensington Gardens; always a two-er or a three-er.

 

In my teens I thought Murphy was a capitalist pig, like Mr Clean in The Jam song. This unlikely business-man was forced to defend ‘the system’ in arguments in the sitting room of our family home in Brighton. My mother and I were members of the Militant Tendency. Murph was kind and respectful to all the extremists and striking miners who crossed the threshold. A friend from that era said he was ‘the most likable capitalist that you could ever meet’.

He never minded being ribbed about his small c conservatism by our old friend Richard Headicar, which became a running joke. I wasn’t very nice to Murph when I was a teenager. I still feel really guilty about this, but he was still there when I came back in my twenties. He was often away on business but always returned bearing gifts. I loved the perfume samples and luxury knick-knacks that accumulated on my dressing table.

Murph had a talent for friendship because he was genuinely interested in people and non-judgmental to the point of recklessness. When my mother died in 2001, it was all back to Murphy’s after the pub. Some of them never went home! The basement flat where my grandmother breathed her last was occupied for a time. A rackety pair of drunks conducted an affair there. I could have been more hospitable to them, I’d moved out by then, but I am my mother’s daughter. ‘The drunks’ always scared me.

When he got ill, some of his friends found excuses for not coming to see him. I’m grateful to those who stayed the distance. Hearing about their family dramas, difficulties and successes was a tonic. When I visited, he always asked me how my friends were and he knew everything about all the people in my life, as he always had.

What can I say about Murph’s sense of humour? Mischievous is close but not quite right, and my brother prefers Elliptical. He would set up running jokes that would run for years. He drove my mother mad by saying he was a better poet than Bob Dylan,

It was hard to gauge what Murph’s quality of life was like at the Red Oaks nursing home but he did seem quite contented watching the BBC news channel with the volume turned up, being visited regularly by family and old friends. The scene around his bed was like the pub without the bores.

Like his father, Murphy was tolerant and optimistic. He was never depressed even when he became symptomatic.

I now know why he was so evasive when I was growing up and unwilling to talk about his family. He didn’t want us to grow up in the shadow of Huntington’s disease, as he had. When I got married, he thought long and hard about whether to tell me I was at risk of HD and decided not to. For a man of integrity like Murph, this must have been very difficult. I was angry with him for years, not any more. He carried this secret around with him– what a terrible burden – until he was finally diagnosed.

 

Late, Sir

 

The weekend before he died, M wanted to talk but held my gaze instead. As I may have mentioned, HD robs you of your ability to communicate while remaining aware of your predicament and your surroundings. Murph always knew who we were and it was clear he could follow our conversations. Every so often, with enormous effort, he would make a joke. The staff clearly loved him; he was still making friends and his personality was intact. He was himself to his last breath, and I will always be grateful for that. Murph talked as best he could about his remarkable father and his grandchildren’s achievements. He told us how much he loved us and, typically, he was worried about me, which he said was ‘only natural’.

 

Handbags at Dawn

I’m always a late adopter: I apologise for talking about RuPaul years after everyone else has declared themselves pro or con. I have been enjoying season 2 of Drag Race on Netflix, but I feel ambivalent about it. Should I let my young son J watch it? My daughter A said the rude jokes would go over his head, but he does love catchphrases. What will happen if he says ‘Good luck and don’t fuck it up’ in the playground or in Granny’s presence? My husband thinks the programme is dystopian but he clearly isn’t the target audience. J and I love glitter-gun transformations, the more extreme the better.

I love live art but I’m far too scared to do it myself. Some of my best friends are performance artists with well-honed personae that they have been working on for years. Sadly, J isn’t old enough to take to Duckie at the Royal Vauxhall Tavern and see them perform. I hope it’s still there when he is.

I had one idea for a live art piece: forming a band with other HD sufferers called ‘Charlotte Raven and her Kind’.  I wonder what my friend Murray would make of Drag Race? He liked RuPaul in the Nineties. We used to sing along to ‘Supermodel’ when he came round to my flat in West London, but he may have ditched Ru now he’s mainstream (Ru not Murray)

 

 

I’m worried about the racism and misogyny, but Drag Race was recommended by two of my most trustworthy and politically-aware friends. The Guardian thinks it’s the best reality show bar none. I never let A and J watch the X Factor, but Drag Race is more humane. No-one is humiliated or set up to fail. ‘Lip-syncing for your life’ should be undignified but it’s strangely life-affirming.

I let him watch it in the end. He loved it. We have been bonding around the TV. A personal highlight was the ‘snatch game’, an innuendo-heavy parody of Blankety Blank/Celebrity Squares, where the contestants performed celebrities. Last night J was singing RuPaul in the bath.

‘Don’t be jealous of my boogie, don’t be jealous of my boogie. You say that you are not but I always see you looking.’

J felt sorry for homeless Tyra, the winner of series 2, but didn’t think she deserved to win. Raven was his favorite.

J has a great sense of style. I love the black nihilist coat I bought him from Zara. It says ‘NOTHING’ on the back in big white letters. Understandably, J hates the trucks and badly-cut jeans in the boy’s section of John Lewis. We get his super skinny jeans from the girl’s section in Uniqlo. I hadn’t considered Zara until I went there with a friend who was looking for a sun hat for her son. J liked everything in there, but the jeans he tried on didn’t cut off his circulation like the too small Uniqlo ones, so were rejected.

 

working the nihilist look

 

I covet J’s coat. And he covets my handbags. They are all piled up in a shelf in my study, and every morning before school he spends s few minutes thinking about which of them will go with his outfit. Although it’s more practical, he hates his school rucksack.

‘Mum, does this look nice?’ The smaller bags look good on him, but he prefers my big grey All Saints bag that is my pride and joy. I bought this from a charity shop in a posh part of London but I’m scared to take it out in case it gets rained on. I am between bags. My favorite one broke and J hated it anyway.

He has been weighing up whether to go trick-or-treating as a witch like he did last year, but might go for something more gender-neutral. Not a character as such but a scary presence. Last World Book Day, he was teased for his Matilda bow. It remains to be seen whether RuPaul will inspire him to ‘work’ a goth-girl or black-widow look on the 31st. I don’t want to corral him into drag, or make him feel I wouldn’t support him if he wanted to fit in.

 

All dressed down; HD versus my wardrobe.

What shall I do with all my clothes? I have 2 wardrobes full then and weirdly, nothing to wear. They were mostly bought with a different me in mind. I have cocktail dresses, skirt suits for the office, boho festival outfits, party dresses, vintage statement pieces and origami from Issey Miyake.

I loved my weird dresses, more than my husband or children did. They aren’t sexy but I do feel like myself in them.

The different eras of my life are represented; my mod parka is moldering slightly out of reach. I’m always pleased to see the gothic Morticia dress I bought in the Kooky Shop in Brighton in the eighties.

I want nothing this society’s got?

The Prada heels I bought with my book advance remind me of the nineties. My therapist made me buy them and a red Moschino dress. LM thought my Issey Miyake cowls contributed to my depression. She sent me off to Harvey Nichols in search of something more cheerful. It didn’t work! In The Priory oversized jumpers were considered de-rig.

I couldn’t walk in my heels then. Nowadays I struggle to balance in anything other than the sensible Merril sandals that J hates.

It might be time to admit defeat; I’m too rough with my clothes, I keep tearing them. HD has cost me a fortune in repair and dry cleaning bills. Apart from anything else, it’s hard to keep up with all the washing. Every time I eat, I spill food and drink all over myself. I have taken to wearing a plastic apron but there is a gap between the apron and the top of my top. This morning, I ate my breakfast naked apart from the apron, but I spilled cornflakes all over my chest.

I need practical, sensible clothes suitable for the school run. My carer has helped me to identify the dresses she thinks might sell on eBay. There is also a pile to take to Oxfam. But can I bring myself to let any of them go? At my carer’s suggestion, I went to Uniqlo on Oxford Street in search of jeans and sweatshirts. I came back with some beautiful, complicated ‘pieces’ (when did they start calling them that) from their collaboration with edgy English designer J W Anderson. At least they didn’t cost the earth. I’m ashamed to admit, when the money for my clothes came from our joint account, I used to hide my shopping bags from my husband.

I used to take A to Liberty’s when she was a toddler. The assistants were always very nice to her and she remembers the place fondly. Somehow, A became aware of the strain my Liberty’s habit was putting on our family finances. She helped me kick the habit using a reward chart like the one we made for her for staying in bed all night.

It worked! I haven’t been to Liberty’s for years. When I did, I couldn’t afford it. Whenever I go past it I feel a pang of guilt, picturing my dad on a velvet chair in women’s wear, choreic, waiting for me for me to adjudicate between APC tunic dresses. He always paid.

J would love it there. ‘To Liberty’s!’ he said when I was walking him to school today. I’m anticipating a few grand from my fathers will. J wants me to spend ‘at least some of it’ in Liberty’s.

‘To Liberty’s…’

Rather than sell or give them away, my husband thinks I should wear my posh clothes every day, ditching the apron. If I took pictures of the ketchup stains, I could call it a performance art piece.

I’m going to the ballet with J on Monday. We discussed what to wear. ‘It has to be your Ozzie Clark mum’. He has never seen me in my legendary moss crepe maxi dress. I used to say it would be the second thing I’d save in a fire, after the family.

Missed Adventures

I wish I’d gone on adventures and trips abroad while I still could. Time is short though. Should I write a bucket list? Everyone seems to have them. My husband was given ‘1000 places to See Before You Die’ for his 50^th birthday, but there are hardly any places he hasn’t been to. On the bookshelf behind me; ‘100 Films to Watch Before you Die’ and ‘100 Books to Read Before you Die.’ I can’t really read or work our DVD player without my children’s help.

My anxiety (and parochialism) has stopped me from expanding my horizons. I was too worried about getting food poisoning to go on a family holiday to Egypt where they camped in the desert. I didn’t go to Ireland because of the rain, or Dorset because the chairs in their holiday cottage are too uncomfortable.

I’m glad that my children are well travelled. A and J have been to Africa, Egypt, Ireland, Italy, Iceland. France, Lanzarote, America and Croatia. My husband is planning to take A trekking through the Burmese jungle next year. They have prepared for this by wild camping in Wales a couple of weeks ago.

Reflecting on it now, I think the rewards of travelling would have been worth the risk. Beached in front of the TV, my life flashes before me. There are many interior shots of me smoking in different front rooms, but very few in in the wild. In mid life, I am surprised by a sudden wander-lust. I long to head to the hills with a day-pack and some energy bars. Or, less ambitiously, book a European mini break in a mid-range hotel.

Now that I want to go away, no-one wants to come with me. I was a difficult person to travel with. A few years ago, before we had children, me and my husband went to Gran Canaria. On arrival, I was dismayed to find a barren, volcanic landscape with no trees. This may have been disappointing, but was it my husband’s fault? Whenever I went to places, I often fell out with them on the first day. Unfamiliar vistas used to make me anxious, I’m not sure why.

Ravens are sedentary creatures… my brother lives in a beautiful Regency flat by the sea in Brighton but he never walks along the prom, which seems mad to everyone apart from people who knew my mother, Susan. We moved to Brighton from London when I was 11. When I was growing up, there was no culture of family walks, not even on Christmas Day. Susan hardly ever left the house apart from occasional trips to the Peking or The Ashoka restaurants, where we’d argue noisily. My father used to take us rollerblading along the Front but I can’t remember Susan ever going there. In the Eighties, when I was a teenager, there were only a couple of cafes on the prom selling weak tea in polystyrene cups, and seedy amusement arcades. This was perfect setting for my sub cultural teenage exploits. Brighton has changed since then, but ’jimmy’s alley’, where Jimmy had sex with Steph in Quadrophenia, is still there.

Brighton prom; gaudy distraction

My husband’s favourite beach is Ringstead in Dorset, where his family rented a house. It’s pebbly and blustery. He learnt to swim, then to sail in the bay in the seventies (wetsuits are for wimps).  Ringstead is owned by the National Trust so there are no ‘Kiss Me Quick’ hats or gaudy distractions from its natural beauty. It makes Brighton look cloyingly artificial, but there’s nothing much for me do there. I used to love swimming in cold water but my lack of co-ordination has made breast-stroke very difficult. So I just sit there waiting for my wet-suited children to be washed up on the beach.

Ringstead in Dorset

I like posh hotels but can’t afford to pay for them myself.

I think I need a travel companion with no emotional baggage. I can’t help feeling I have clipped my husband’s wings. Rather than feel guilty about the past, I’d like to set off on a journey with a clear horizon. I wouldn’t mind being a tourist; I’m not snobby about that. If I focused on the places rather than my preconceptions about them or my levels of discomfort, I think I’d enjoy myself.

Any suggestions for destinations would be welcome. I’m too young for a cruise though.

The Drugs Do Work…

…but they won’t give them to me.

Sleep disturbances are very common with HD. The somnolent effects of the mood stabilisers and anti psychotic drugs I take at night, seem to have worn off, annoyingly. I have spent the last few weeks tossing and turning or spinning which is how J described it before deciding to desert my super super king size bed in my cool bedroom in favour his boiling hot bottom bunk bed. One by one, for different reasons, members of my family have abandoned our mid range Warren Evans bed, leaving me cocooned on the far right hand side.

A asks me why I always sleep right at the edge of the bed when I’ve got so much space. J has also complained about me nicking the duvet as my husband used to.

I have an OT working with me to manage my fatigue. She has suggested various strategies…

To avoid making endless trips up and down stairs, I should gather everything I need from the top floor first thing in the morning. I should rest after each activity and use the tumble dryer instead of hanging the washing up on air dryers.

 

After the hoovering, time for a rest

None of this would be necessary if they gave me sleeping pills, as I have repeatedly requested. My neurologist prescribed Zopiclone when the melatonin he had suggested for my sleeplessness didn’t work.

It was hard enough getting that! In the end, I smuggled some in from the US. Although it is a natural sleep aids with no side effects, my GP said she wasn’t allowed to prescribe it. ‘It works so well everyone would want it.’

It’s available in the US without a prescription. I asked my American friend to send me some but I was disappointed to discover that I was the exception.

I need something stronger, but how to go about getting it? Dr B was shocked when I told her I self medicate with dope. This doesn’t send me to sleep but it does stop me fidgeting. It also makes the hours I spend beached on the sofa in the evening pass more enjoyably. When my brother visits we treat ourselves to ‘Big Brother’. He’s the only person I know who still watches it. D argues that it’s still an anthropological experiment. In spite of themselves, house-mates lose the super styled personae they come in with.

I’ve never watched a whole episode of ‘Love Island’ which seems unwholesome however stoned I am. They were talking about this ‘guilty pleasure’ on Radio 4 yesterday. The ‘bluffers guide’ on PM was typically patronising. The woman who devised ‘Come Dine with Me’ said ‘Love Island’ was post-modern. I was pleased to hear A had discussed it in the feminist club in her school but surprised to learn that all her friends are fans.

I’ve got an appointment with the GP on Tuesday. My carer is coming with me as I’m likely to be too tired to argue the case for sleeping pills. There has been a national debate about the over prescription of drugs. This might be why Dr B is reluctant to follow my neurologist’s advice. On the other hand, I sense that she is morally opposed to drugs. In the past, various doctors have suggested sleep hygiene techniques and relaxation tapes. But what if your sleep problem has a medical cause as mine clearly does? Avoiding screens in the evening has worked for A but not for me.

I keep thinking about valium –  a pharmaceutical comfort blanket. It would be good to have some in the cupboard for emergencies.

It’s sometimes hard to tell whether I’m longing for drugs to alleviate the tedium of being ill or to relieve suffering. Either way, I’m determined to take more the next time I go to a festival, although the MDMA I squirrelled away since the last big party we had here is probably past it’s sell date. In mid life, I find myself looking back regretfully at my reluctant hedonism. I was a student in Manchester during the summer of love in the late eighties, but I was far too busy arguing with people in the student union to risk embracing strangers in a sweaty nightclub. I went to the Hacienda but only on indie nights.

If my doctor won’t give me the pills, I have a back up plan born of sheer desperation. I have been asking around, to see if anyone could recommend a safe and reliable online pharmacy where I can buy sleeping pills. I can’t tell A though as she has seen what happens to people who buy drugs online on ‘Casualty’. I’m scared myself, but I can’t face more nights of spinning as the days are stolen away. I find myself shouting at the children, wishing my GP could see this scene, wondering if it would make any difference.

Any suggestions?

 

 

Words fail me

Reading for pleasure is my biggest challenge yet.

The speech and language OT who has been investigating my problems with reading signed me off last week. She did lots of tests.

I don’t have aphasia, which would be very unusual in HD in any case. I’d successfully completed my homework; to find a book I actually wanted to read. I chose Patrick Hamilton’s Hangover Square because it’s one of my brother’s favourite books. The pub scenes must have had the ring of truth. My parents met in ‘darkest Earls Court’ where the book is set, but 20 years later.I read it from cover to cover.

Like many people, my shelves are full of books I feel I should read. In my study, dauntingly, there are difficult books from floor to ceiling; Slavoj Zizek and Irigaray’s This Sex Which Is Not One and Primo Levi If This is a Man and Lacan’s Ecrit’s. The only light reading is Katie Price’s Pushed To the Limit, which makes everyone laugh when they see it, apart from the feminists.

The Unread

I think of myself as the type of person who reads philosophy over breakfast. But I busked my Critical Theory MA with the Fontana Modern Master’s series as my constant companion. I still feel like an intellectual fraud not an educated person, with some justification. My children were amused to discover how bad my O and A levels were but I was a teenage activist in the Thatcher era

Growing up in the eighties was terrible for my concentration. The time I spent at extra curricular political meetings and drinking with striking miners was bad for my grades but vital for the development of my revolutionary consciousness. My mother supported me until I went to a demo during school time and she started worrying about my future prospects.

These days, I want to read for pleasure not to polish my critical thinking skills. My mother read three books a week and my daughter has just finished The Midwich Cuckoos by John Wyndham. She loves dystopian fiction. We’re working up to The Handmaid’s Tale via a TV adaptation of Atwood’s feminist classic.

The OT has suggested that my reader’s block might be psychological and cognitive because it’s highly selective. We were amused to discover that my columnist’s ability to search and destroy my journalistic bête noirs is intact. I read and retained various confessional columnist’s entire oeuvres.  One in particular about someones boiler breaking down when the weather was bad, which was fixed as soon as the sun came out and the temperature rose again. I even remember where I was when I read that particular column.

In the past, I have always skim read everything to siphon off ideas. Or, as my husband says I read books for evidence to support my theories, rather than challenge them and there is some truth in that. I read so quickly – a hundred miles a minute – and it’s hard to get out of this habit.

I read Patrick Hamilton quickly but some of it went in. I tried to read with an open mind without rushing to critical judgment. As expected, the pub scenes were well drawn. I could picture my father propping up the bar and being endlessly tolerant of the rackety alcoholics. He is a good listener and always seemed to attract the people no one else would sit next to.

My friend has another explanation for my selective reader’s block. I might be jealous of good writers, particularly successful ones. This has the ring of truth. I’ve spent many disagreeable hours slagging off literary celebrities to anyone who would listen but I’m over that thankfully.

 

Charlotte Down the Rabbit Hole

Last Saturday, I took J to an immersive theatrical experience called Alice’s Adventures Underground. J had persuaded me to book the adult version, not the kid’s version which he said sounded rubbish. I had been dreading it for weeks and then…

‘Mum, the day has finally come. I can’t believe it has finally come!’ It was a late birthday present for J and I had been (mostly) successful in covering up my apprehension but now the day had come I was getting more and more nervous.

I love the idea of immersive theatre but in reality I am far too anxious and suggestible to cope with being plunged into someone else’s bad dream. Even before I had HD I found them overwhelming and HD has added disorientation. I keep getting lost in familiar places and unfamiliar ones … even with family members are terrifying.

At festivals, I cling like a limpet to my husband and make sure he is always in view. I still get lost though so we always arrange a place to meet away from the crowds. When I’m waiting for him minutes feel like hours.

In immersive experiences, I always look for the way out. There is usually an emergency exit for people with a nervous disposition. A few years ago, I went all the way to Manchester with my husband to experience Adam Curtis’s ‘It Felt Like A Kiss’ which successfully conveyed the nightmare of the American dream. Chased by a man with a chainsaw, I escaped through a door that led onto an alleyway and tried to gather myself. I knew my husband wouldn’t wuss out half way through the experience so I waited for him at the end with my heart pounding.

They didn’t have a way out in ‘Adventures in Moominland’ at the Southbank but J held my hand throughout. An actor guided us through Moominland, but Tove Jansson’s imagination is dark edged. The large and lovable Moomin evolved from a Snork… a thin and ugly creature with a long nose and tail like a devil. Cast adrift in Moomin valley, I feel menaced by fascist Snorks and impervious to enchantment.

I made sure we arrived at Alice early so I could scope out Wonderland and ask the people on the door whether it was possible to get completely lost there. J was the youngest in the queue and I hoped they would think he was the one who needed reassuring.

I fell down the rabbit hole with Alice

 

45 minutes later, we reemerged from the rabbit hole feeling quite pleased with ourselves. We drank tea with The Mad Hatter, stole the Red Queen’s tarts and joined an insurrectionary movement.

After a lot of twists and turns, non-sense had prevailed. The narrative had carried us along and I had successfully feigned enjoyment, or so I thought.

‘Maybe you’d enjoy the kids one better mum?’ John said.