SweetTree Case Studies,
Living With Huntington’s Disease – by Charlotte Raven
Inspirational journalist, editor and SweetTree client, Charlotte, pens with passion and humour her views and insights into life whilst living with Huntington’s disease.
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.
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.
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.
To read more of Charlotte’s work visit her blog page here