By Lucy Pennock
The first seven weeks at the SCA has been an absolute whirlwind of an experience. We’ve laughed, we’ve cried, we’ve failed and we’ve fought. We’ve argued and then made up. (Some of us have even hooked up.) We’ve made good work. We’ve made bad work. Actually we’ve made mostly bad work. But that’s OK we’re learning.
Personally for me these first few weeks have been a huge exponential learning curve and I’m sure it’s only going to get steeper and sharper as we dive back in. I feel like I’ve grown up in many ways, and immatured in a few. But that’s alright – I’m a student.
In this SCAB I want to talk about relationships.
I have no idea where to begin so I’ll start with my last one.
In July I broke up with my boyfriend of just under a year. It sucked massively and as I retreated back to my family home in Suffolk, I collapsed into a weeping heap before my parents. Recently jobless and now boyfriend-less, my life had entirely flipped on its head and by no means was I mentally prepared for it.
I went through the usual motions of anger, sadness, debauchery, and then sadness again, intermingled with bursts of delusional euphoria. After a few weeks I felt better. I was coping, aided by long runs along the beach, swims in the sea. It felt like my depression was lifting. I spent my mornings sipping coffee and solving crosswords with Dad, my afternoons writing and reading in the warm sunshine. I felt like I was wrapped up in cotton wool, safe, protected – enveloped in the love and support of my parents. But then I had to move back to London…
SCA was about to start however I was nowhere near ready to catapult myself back into reality. I wanted more time. I didn’t need it, but I wanted it. I think I was just scared to be honest. Anyway I soon started stressing about finding London accommodation. My budget was minimal and the more time I trawled the Internet the more I panicked. There was nothing out there! Until, I stumbled across Charlotte – a woman in her late 40s suffering with Huntingdon’s disease. She was advertising a spare room in her family’s home in Kentish Town in exchange for part-time care. Intrigued I sent her an email.
For those of you who don’t know, Huntingdon’s Disease (HD) is a long-term degenerative disorder that slowly kills nerve cells in the brain. It affects your mood, memory and mobility. It’s inherited from birth and there’s currently no found cure.
When I first met Charlotte and her family I was pretty apprehensive. I had no idea how far along her illness she would be. Could she walk, could she speak? I had no idea. I’d also never lived with a host family before. To say I was nervous would be an understatement. I was also extremely conscious of coming across as ableist. Conscious or not I didn’t want to slip up and say something offensive.
As we got talking her husband explained their current situation. They had recently separated and he wouldn’t be about as much as he once was. With two kids Charlotte needed an extra pair of hands to help her around the house. She had carers in during the day but in the evenings it was nice to have another adult around. Cooking dinner for the family was the main priority. She couldn’t chop things up because of her coordination and got muddled with the timings when heating things up. Most of all she just needed a friendly face to sit and watch Netflix with in the evenings. A confidant to chat over a glass of wine with or take her to a gallery. Things she used to enjoy before she got ill.
Fast forward a month and it’s been four weeks since I moved in. Hands on heart it’s been one of the best things I’ve ever done. Living with Charlotte has taught me so many things about people with disabilities both physical and mental.
Charlotte hates going out in public because she feels like people are constantly staring at her. She’s incredibly slim (a symptom of the disease) and suffers with uncontrolled movement of the arms, legs, face and upper body. She told me she’s riddled with anxiety all the time because she forgets things constantly like her phone or oyster card. Going out is a nightmare.
A couple weeks ago I took her to the V&A but when we went to pay for our tickets she suddenly realised she didn’t have her purse. She was adamant she’d left it on the tube. Immediately, she panicked and I could tell she was distressed. I told her it was going to be alright and that it was probably at home. She explained that she couldn’t cancel her credit and debit cards because every time she phoned up the bank she failed the security questions. She had no idea what her passwords were.
Living with Charlotte’s not all doom and gloom. In fact she didn’t lose her purse. She just left it at home. To be honest Charlotte’s pretty fucking cool. Way cooler than me. Since getting to know her I’ve been waiting for a chance to gush about her, so here I go.
She studied English Literature at Manchester. She was part of her student union and was a key figure in the women’s movement. She worked for the Modern Review, an edgy 90s magazine that was the first to analyse pop-culture in an acamedic sorta style. She had an affair with writer Julie Birchill who has since married her elder brother. Scandalous right? For years she had a column in The Guardian where she wrote about feminism. She’s a member of the Labour party and knows Ken Livingston and Diane Abbott. She’s also best mates with Cornelia Parker. Like seriously what the fuck?
Anyway, what I found most admirable is that she’s just finished writing her book. It’s in partnership with the lead researcher and director of the Huntington’s Disease Centre at UCL. Part memoir it unravels her experience of living with HD along with some groundbreaking research that’s recently been discovered about the disorder.
All in all this woman is bloody amazing. Not only is she super bright, quick-witted and hilarious, she’s also got the kindest heart. The more time I spend with her the more I really do care for her. She trusts me and I trust her and it’s like we’ve formed a little partnership. We eat together, we go to the cinema together, we visit art galleries together, we drink wine together, we smoke the odd cigarette together. It’s like we’re dating.
The interesting thing is she’s actually been helping me more than she’ll ever realise. The stronger our bond grows, the stronger I become. I feel like I’m slowly mending. Day by day life gets a little bit easier, a little bit lighter. Heartbreak still hurts but not as much as it used to. I’ve got a new woman in my life right now and she’s called Charlotte. And I’m so grateful we’re dating cos I’ve literally got no time for anyone else right now.