Please note: the following story recounts Teresa’s experience of developing paralysis as a result of Guillain Barre Syndrome, which some readers might find distressing.
Since 2018, we have been collaborating with neuro disabled Lived Experience Consultants (LECs) to make sure our work is accessible to them and authentically reflects their lives.
Teresa is one of our Lived Experience Consultants, and this is her story.
In 2018, aged 64, Teresa finished work and headed to her daughter’s house to babysit her granddaughter. Arriving home later that evening, she ate dinner and went to bed to read a book before drifting off to sleep.
At 6am Teresa woke up to discover she was unable to move her legs, at which point her life changed completely.
After being rushed to hospital, Teresa was diagnosed as having Guillain Barre Syndrome and spent four and half months in intensive care, paralysed from the neck down. She was transferred to the Royal Hospital for Neuro-disability as a residential in-patient and was undergoing intensive rehabilitation treatments when she was first referred to take part in CoDa’s dance sessions on the ward.
Now discharged from the hospital, Teresa works regularly with the CoDa team as one of our Lived Experience Consultants, helping shape the work we create. We chatted to her about her involvement so far.
How did you first get involved with CoDa Dance?
I was a patient at the Royal Hospital for Neuro-disability in Putney. I met the girls (CoDa) when they came in for a class one Thursday morning and we all sat round in a circle and they played music – I love music anyway – and we did some dance. I was in the rehab part of the hospital, having spent four and a half months in intensive care with quadraplegic Guillain Barre Syndrome and had to learn how to do everything all over again. When I was referred to the first class it was such fun and we all had different disabilities. The CoDa team were so good with the patients and those that couldn’t move very much. I enjoyed it so much that every time they came I went to their classes.
How did the classes help?
In an emotional way because it was happy, and I love music, and the CoDa team are very very good. But also, when you can’t move your fingers properly, or your arms properly, any exercise is very good. So bit by bit, just doing simple things like splaying your fingers, without knowing it, you are doing exercise, particularly because it was so much fun and suitable for whatever your ability was.
When you’re able bodied you go through life and, although you’re aware of people having difficulties and disabilities, you don’t always give it a lot of thought. It’s only when something happens to you that you realise just how difficult it is: speaking, walking, sitting-up, eating. I’ve always been compassionate but it’s made me have more empathy and realise how people’s lives can change on a sixpence.
The CoDa team, they come into the hospital several times a week now and they are so good with the patients. It was very important for me when I was a patient for people to treat me like a human being, seeing me and not just what had happened to me. That’s what CoDa do.
Had you ever done any dance or movement before?
I wasn’t always the first on the dancefloor but in nightclubs I would always be there at the end of the night – but I don’t know if you would call it dance at all!
Would you describe yourself as an arty type of person?
Not at all! I like colouring and knitting and during lockdown I did some painting by numbers which I am proud of, but I wouldn’t say I am masterful at it!
How long have you been working with CoDa as a Lived Experience Consultant?
About two and half years.
And what does it involve?
When I was asked to join, I didn’t really know what to expect. I joined with two residents from Putney ((The Royal Hospital for Neuro-disability), and I’ve learnt so much. We started off by talking about our own experiences and, even though we all have very different experiences, we found a common link. All of us wanted to be seen. I’m not a patient, I’m not a resident, I’m Teresa and I did have a life. I’m out of hospital now and even though the other two are still residents we all felt the same. When we first started with Nikki we realised that we had a common thread of wanting people to realise the journey we had been on. With the help of CoDa, it was getting it across to people that all have that same realisation, that fright, that worry, that terror, and it’s there for everyone.
Going through the project from beginning to end and pulling it all together, through dance, the CoDa team absolutely understood what we were saying. All the way through the team discussed what they were creating and asked us what we thought. They came and showed the final piece to all the staff at the hospital and you just hoped that it made people realise the whole raft of emotions you go through after the absolute horror of what’s happened to you.
CoDa has been very special. Through their dance, through their exercises, and the way they treat people is just lovely, and their understanding is really good.
Would you encourage other people with neurological disabilities to get involved with CoDa’s sessions?
Oh most definitely. You’re with other people and no-one is expecting you to be an expert or some sort of gymnast. They’re showing you some exercises, a few dance movements and how good it is for your body and how good it is for your brain.
What’s next for you and CoDa?
I’m not sure but I have said to Nikki (CoDa’s Artistic Director) that I would love to help in any way I can. I have been fortunate to receive fantastic treatment so if I can give back something I am more than willing to do that.
Image: Teresa with CoDa Artistic Director Nikki. Photo Cave & Sky
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