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.

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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.

Independence

It’s Friday morning. I’ve just taken J to school and I’m wracked with guilt because I shouted at him yesterday.  Aggression is one of the most difficult things for HD families to cope with. In the past, my rages were always directed at my husband and I’m really concerned that J and A will bear the brunt of them now.  I thought my anger was under control but the most trivial thing can lead to a meltdown.

Last night, J was trying to be helpful by bringing me my post. My new debit card was amongst the papers on the hall table and when I went to look for it again, it had gone. I shouted at poor J.  Of course, he was wrongfully accused. I had put it in the drawer in my study because I thought I’d lose it!

‘Look.. you made him cry.’ A said. ‘Go and say sorry.’

I ran upstairs after him. J had barricaded himself into his bedroom and I could hear him crying. When this happens what can I do but try to explain (again) that it’s HD not me?

Ade won’t be back until Monday! In the present circumstances, 12 hours of care a week just isn’t enough. I asked my new social worker to come round and reassess my needs. But knowing how social care budgets have been stretched and I can imagine how hard it is for R justify diverting (more) funds to a middle class woman with avocadoes in her fridge. I almost feel embarrassed asking for more help; if I were R’s manager, I would ask tough questions before agreeing to it.

When R came round, the house looked clean and orderly. The sun was shining and the newly washed windows were gleaming. At the top of the garden, the tree house my husband built for the children evoked fun family times. The children weren’t there; I forgot to mention my outbursts. My OT was there, fortunately. She has been helping me with strategies to make some simple family meals. I have laminated recipe cards with the method in a big font and tick boxes for every step. The tick boxes do work. I did manage to make a quorn bolognaise but it took so long and – as usual – I made so much mess, I couldn’t face making the meat one.

The social worker has gone on holiday. In her absence, we are all assembling evidence to support my claim. Ade is going to go through the administrative tasks she helps me with and working out how long they take. My OT has watched me making lunch and she has made detailed notes about the difficulties and distractions. I keep knocking everything over and managed to break one of the last china plates in the house. She also timed me. It took me 40 minutes to make a cheese and cucumber sandwich! No wonder I’m losing weight. It’s difficult to focus…I’m always tired. The OT gave me a fatigue diary to complete but I was too exhausted to fill it in.

I’ve changed my view about independence (again). For the last couple of months, I have tried to be good humoured about endlessly clearing up after the children, doing housework inefficiently, knocking things over and working through my laminated recipe sheets step by step. I moaned so much about this in the past and tried to get out of doing my fair share of domestic tasks. Pairing up socks yesterday, it occurred to me that I might be throwing the baby out with the bathwater. I’m trying to prove something to my husband but the argument about the unfair division of labour had already run its course.

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Beware the pairing of the socks

While belatedly trying to redress the balance, I’m in danger of losing myself in domestic martyrdom. My husband didn’t marry me for my cooking and there’s nothing empowering about doing housework badly. If they do increase my hours I will use them wisely. It’s more energy efficient to ask someone to make my sandwiches, leaving me with the time and energy to focus on resurrecting my feminist magazine.

 

Looking for Ida

My grandmother was institutionalised at the age of 39. I grew up knowing nothing about her and never quizzed my dad. I was too self-absorbed to think about the ellipses in my family history. This suited him. He wanted to efface HD from the record and would have succeeded if he hadn’t got ill himself. When he became symptomatic we all started asking questions, but he remained evasive.

It has been very strange getting to know my grandmother after all this time. Murphy (as we always called my dad) was more open in his later years and probably would have told me anything I wanted to know if he’d been able to. I’ve pieced her story together with my uncle’s help. Uncle Colin, a salesman from Oz, is more forthcoming, although my aunt says he never talked about his childhood until recently. He is a larger than life character with a loud voice and a persuasive manner. He couldn’t be more different from my dad. He is straightforward where Murphy was enigmatic. Opinion is divided about whether there is a physical resemblance. I think the jawline is similar.

Colin now wants to know everything about his family.  He has spent the past year on ancestry.com tracing the line back and firing off letters to family friends looking for clues to his identity. He dug up a picture of my great grandmother who, I was pleased to discover, looks like an olden day lesbian with short hair and broad shoulders alongside her elegant consumptive looking sister who died young. But there was no picture of Ida.

By chance, last year I came across a memoir by a family friend, Peter Congdon.  A Bomb in a Basket recounts the six years of World War 2 as seen through the author’s eyes. I thought it would be good background reading, which would give me a flavour of life in wartime Plymouth. I was surprised and pleased to discover that Peter was a good friend of the Ravens and we feature prominently in the book. Peter went to the same school as my dad and his brothers: Johnson Terrace school. In the chapter Plymouth in the Front Line, he describes the Ravens. This description of Ida made me cry.

‘Reg had married Ida his wife in the early 30s. She was a strange woman with a deep voice and rumour had it she had been a nurse. Although apparently educated and articulate Ida presented as a shabbily dressed lady who was often to be seen smoking cigarettes. Her standards of hygiene, cleanliness and housework were not of the highest quality and much of the responsibility for running the home was left to Reg who was often seen shopping for the family. At the time, little did we know that Ida was suffering from a serious mental illness that was to worsen over the years.’

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Ida Raven: lost and found.

According to Colin, she hardly ever left the house. I can picture Ida on the sofa  (‘in her misery’ to use Colin’s phrase) with no pharmaceutical props chain smoking while family life went on around her. The radio was always on; Ida liked radio dramas. I’ve asked him lots of questions about his childhood and I’m starting to form a picture of life in the two up two down in Townsend Avenue). Peter Congdon said it was ‘liberty hall’ compared with his house and they took turns jumping from the top of the wardrobe onto the bed.

There were four boys and they all have normal names apart from Vivian. Peter, Paul and Colin. Why was my dad called Vivian?

Colin said Ida was embarrassing. She did weird things that were well intentioned, like making a lurid pink blancmange birthday cake for my dad’s birthday and putting household candles on it. They were all sick. When she picked them up from school he was conscious of her dirty dress and wraith like appearance. Rationing meant a high calorie diet was difficult to muster and Ida ate porridge out of the packet.

They never doubted how much she loved them.

Ida spent two long stretches in Moorhaven Asylum in Ivybridge near Plymouth. Did she go there voluntarily? Colin doesn’t know. He remembers visiting her there and the smell of disinfectant. It looked like a grand country house with many outbuildings and beautiful views across the moor.  It had its own railway station and farm. I really hope it felt like a community, not a madhouse.

What was life like for Ida?  I picture Nurse Rachett in One Flew over the Cuckoos Nest on a power trip. And chemical coshes.  Did anyone there understand HD? Was Ida’s treatment plan appropriate? I was worried about ECT, which must have been popular in the 40s. Looking for reassurance I did some research and I came across a social history project called ‘Memories of Moorhaven’ which I gobbled up. The accounts of staff and patients have been a valuable resource. Some people had happy memories but there were many deaths; suicide was so common in fact, that the staff became quite blasé about it. They were always scraping people off the railway tracks.

When Colin visited, he said she’d knitted a cardigan for him and she seemed quite calm, but Murphy remembered it as being ‘grim’. Was she longing for their visits? Murphy clearly longed for mine when he was in a nursing home. The regime in Red Oaks however, was more person focused and there were no suicides. I was concerned that Murph could die of boredom. He couldn’t read, listen to audiobooks or make new friends (even if he wanted to) as HD had robbed him of the power of speech. The other residents, many of whom had dementia, would wander into his room. When we visited, he was always watching BBC rolling news with the sound turned up.

Moorhaven has now been turned into a quirky, upscale housing development called Moorhaven Village. I visited it to see whether Ida’s ghost was stalking the remodeled bedrooms. It was pouring with rain and the kids were moaning, as we were en route to a festival. They stayed in the car and I walked around trying to picture Ida doing exercises on the lawn like they were in some of the pictures I have found. The old hospital morgue has been renamed ‘Dunlivin’. Is this in poor taste? My brother Daniel thinks so. Would I have wanted to live there?

A few months ago, Colin called with some good news. He had unearthed a picture of his mother! Ida is wearing a nurse’s uniform and the picture was taken before she became symptomatic. It is here on my desk as I write. Colin says he took the picture of Ida onto the beach near where he lives in Sydney and said goodbye to her.

I just wish Ida had been part of my children’s lives, like my husband’s mother, not a low res ghost in a silver frame.

Depression

Many HD sufferers experience depression and it’s worse at the beginning of the illness and the end.  There is a lull in the middle.  When I think back to that time, I picture myself fighting with my husband and my hair.  I had a high maintenance bob which defined me, or so I thought.  When things started falling apart.  I became evermore invested in my hair, but less able to perform the complex ritual of straightening it that required three mirrors positioned at different angles and just the right amount of moroccan oil.  I always put too much on and it never looked right.

My hair was a signifier of my inner turmoil.  Last summer, on the day of the Alma Street party in Kentish Town, I spilt Moroccan oil all over my dressing table, creating a mini oil slick on the glass top.  It kept slipping away from me, like mercury when I tried to blot it up with kitchen roll.  I texted my friends to tell them I wasn’t coming.  It suddenly all seemed too much?

I was very isolated in this era.  Every few months, we would have someone round to dinner, but it never really worked.  On one occasion, I brought my hairdryer, mirrors and straightener to dinner with me.  I turned on the hairdryer and drowned out the conversation.  I was wearing a tunic dress that was too short for me which my friend was complimenting and I still feel embarrassed when I conjure this scene.  I hadn’t seen him for years.

I was mortally terrified of the encroaching darkness with no support because I’d burned my bridges and alienated my husband when I needed him most.

We were in debt because of the money I’d frittered away on fripperies.  The Vola taps were always mentioned and my expensive hair cuts.

Here was my nadir…

I thought about suicide but couldn’t think how to do it.  My dad always said he would throw himself off Beachy Head near our home in Brighton when the time came, but before he died – of HD complications – he was shut up in a care home for five years – lacking the will or the wherewithal to carry out his plan.  The time had come and gone for him.

I considered Beachy Head, but there are Christians patrolling those cliffs trying to convince those lost souls that human life is sacred.  I mentioned this to someone at CDAT (the complex depression and trauma unit in Camden) and they gave me an appointment with a psychiatrist within a week.  They gave me a combination of anti depressants and mood stabilisers, and 20 free sessions with a psychologist.

The black dog is never far away…

I’ve been in therapy on and off  for years.  I enjoyed analysing my problems and  entertaining my therapists.  The good ones saw through this strategy and seemed (or were) impervious to my charm. I lay on a couch in West Hampstead for 5 years and free associating into space never knowing whether my stories were making her smile.  This was tough but necessary.

The CDAT woman was less rigorous and daunting than Adele, more like a wise friend who empathised with me and offered helpful suggestions about how to change the dynamic with my husband.  Adele never gave me advice!  After a few sessions with Carly, I was edged into mindfulness based CBT  before I had time to object.  When we weren’t arguing about money and parenting, T and I used to argue about theraputic modalities. He thought my attitude to CBT was typically self defeating.  I thought its focus on transforming negative automatic thoughts set people up to fail.  When you can’t get rid of them you blame yourself, not your therapist, or CBT itself.  I did try one session years ago and I gave the therapist a hard time.  This one size fits all approach ignored unconscious motivations for feeling and thoughts, reducing our beautiful minds to equations on a white board.

Wisely, Carly emphasised the meditation and mindfulness elements, which did make sense to me.  I could see how developing a meditation practice would be good for my mental health.  All the evidence suggests that it works better than anti depressants for some people.  I can see why it would, but it was a tricky thing to master and I wanted a quick fix at that point.  In the ‘breathing space’ at the beginning of the session, I thought about Carly’s dip dyed hair and wondered how much it cost.  The room was over heated or freezing cold, we talked about the here and now, and made plans for a future me beyond this current crisis which seemed plausible until I stepped outside.

When was on my own again, I started feeling doomy and trying to motivate myself to ring The Samaritans.  My friend Garry took me out to a pub in London fields and tried to reassure me but it didn’t work.

Looking back, I feel very grateful to the friends who supported me when I was at my lowest.  My depression will always be with me but it’s like background music that hasn’t been turned up for a while.  The drugs do work and my low maintenance haircut has helped enormously.  I still think my husband was wrong about CBT though, but no longer feel compelled to argue about it.

What strategies has anyone else found useful for dealing with depression?