Still Life

Photo caption1: There in spirit: Gwenda Hayes at our teddy bears’ picnic

Zoë Williams describes ways that people with severe M.E. are managing to create special events within their limitations

Last year Sarah sent a card to her healthy friends (whom she is not generally well enough to see), inviting them to a ‘Metaphorical Tea Party’. Inside was a tea bag and the following verse: ‘I’d love to have you visit, and have a cup of tea, but as I can’t do what I’d like, please have this one on me!’ Now she is planning a different sort of ‘virtual visit’ – sending a cassette round and asking friends to record a short message, a poem or an extract from a favourite book.

I like to spend time with my family while they play a card or board game and I wear ear defenders and an eye mask. It’s not as much fun as watching but it’s still company and a lot less expensive on the energy. My dad sometimes does crafts such as origami in my room, and I have a peek every now and then and maybe get involved with a few folds.

Sharing stillness

Vonne enjoys another form of low-energy visit. She writes: ‘Our contemplative prayer group meets every week in my lounge. When well enough, I lie amongst the group on a zed-bed. If not, I join in from my downstairs bedroom nearby, or upstairs away from the disruption of people arriving. This means the group meets whatever my level of wellness.’

She explains: ‘People arrive quietly then someone reads a few words to lead us into silent prayer. Some people silently repeat a word or a mantra, to let go of thoughts and come to stillness with God, while others focus on their breathing; or, if like me this uses too much energy, we imagine resting in a still and tranquil place. Flowers and a candle give something to gently gaze at when anyone is struggling with silence. After thirty minutes, someone says “let us bring this time of stillness to an end”. There is a little time to come out of silence, then people leave quietly or they may share a thought before they go. I also share times of silence with individual friends. If I’m able, we chat first, or if not we just share stillness.’

As if you were there

Some people have found the internet a boon – a place where they can meet friends and visit art galleries despite being physically unable to get out. Art exhibitions can also be visited by mail order – try ringing or writing to the gallery to ask about postcards and books. Members of the 25% M.E. Group can join long-distance prayer, meditation and art groups, while M.E. groups provide a popular way to socialise, whether at a meeting or by phone, post, talking letters, or e-mail.

Some M.E. groups have held adapted events. For instance, members of the Association of Young People with M.E. (AYME) lit candles as a way of participating in the Millennium celebrations, and blew bubbles for the Queen’s jubilee.

When our local M.E. group celebrated the funding of a new clinic, the clinic committee got together for a party, including a timed toast for those who couldn’t attend. At a national level, thousands of members of AfME took part in their March Demo by decorating and sending in postcards, many of which were displayed on Westminster Bridge.

Attendance by Proxy

I’ve ‘attended’ events such as my brother’s graduation and Grandad’s funeral, from a distance. It helps to have some way of linking with the event – a time, photo, or action such as lighting a candle. Healthy people can sometimes help with this, although they may need encouragement and ideas. An inspired friend sent me a ticket to his ordination – even though he had few to give away. I spent some time choosing who to pass it on to. The mutual friend who received it later included me very well in her wedding – reading out my card at the reception, sending a slice of cake and later bringing round photos and a video.

One possibility for a celebration is to take a leaf out of Geri Laker’s book, and find ways to mark special days from around the world. Geri uses appropriate music and food to celebrate different events – croissants or baguettes on Bastille Day, or wearing tartan and listening to bagpipe music for Burns’ night. Ingebjørg Midsem Dahl went one step further and decided to organise an award ceremony.

She writes: ‘Next week I will have been ill for exactly 21 years. I’ve wanted to mark the occasion for a long time, but haven’t known how to do it. But then a few weeks ago a healthy friend of mine was awarded a young histochemist’s award. I admit that I was a bit jealous - it seems that people with M.E. rarely get recognition of their efforts and struggles. So I figured that I could mark my jubilee by sending an award to my M.E. friends, typed on special paper with gold edging. I’ve set a time and date for a long-distance award presentation ceremony, at which we will make a toast, and I’ve suggested a recipe for the drink. I’m looking forward to it!’

Games by post

At my virtual pyjama party we had optional games - a treasure hunt (with a map on which to draw a cross), prize draws and a postal pass-the-parcel (including ‘M.E. friendly’ forfeits, and stickers as prizes). At pre-arranged times there was a teddy bears’ picnic and ‘Dead Lions’ (which involves lying still so we had some expert players!). Other games circulated by post included ‘how many items can you fit in a matchbox’ and ‘picture consequences’ – one person draws a head, then posts it to the next person who draws a body, etc.

It does take a fair bit of energy to set up or join in with even a simple event. It may also be emotionally complicated – I used to love walking, and it’s only after many years that I am able to enjoy a radio ‘walk’ (mentally joining the presenter as she goes on a ramble) without feeling the loss of the real thing. But for me at least, virtual events have provided some fun, and helped me to feel included. I hope some of you will be able to join us at the seaside (see below), in whatever way feels manageable for you.

Further information

http://www.earthcalendar.net/index.php lists celebrations around the world

The National Gallery is at www.nationalgallery.org.uk or tel. 020 7747 2885

Abilitynet is a charity which helps disabled people get funding for an appropriate computer and training in their homes. Visit www.abilitynet.co.uk or tel. 0800 269545

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