By Mel Levy
So I’m sat in under lockdown, watching daytime TV and for once in my life feeling like a ‘healthy’ person.
I’ll take you back. A few years ago I had a double mastectomy. I was very much of the mind that it doesn’t matter what we look like, everyone should be able to enjoy movement and dancing. In sessions I encouraged residents to move, I’d tell them it was fine to just move one arm, encourage them that any movement was ok. I look back now and realise how little I understood.
I was delivering a session in a regular care home and suddenly my left leg cramped. I couldn’t move it and had to sit down. It quickly passed, but I joked to the activities co-ordinator ‘I think I have a brain tumour’. The rest of the session passed without incident. As the day progressed things got worse. My left arm was also seizing. Without going into further detail the following day I ended up in A&E, as I couldn’t walk or use my left side. Due to my genetic condition I knew that the chance of a brain tumour was there so I asked the doctors to scan my brain. They did and the results came back with a brain tumour called 'L’hermitte Duclos'. It’s benign and very slow growing, but likely to have been causing my symptom. As I knew it wasn’t immediately life threatening I opted to go home and put myself back on an experimental treatment Rapamycin.
A couple of days later I was back doing Musical Moments sessions. Almost immediately I noticed how I wanted to hide my unsteady left hand and my dodgy left leg. I found it embarrassing that I wasn’t in control of part of my body and kept telling residents to ‘use just one arm if they prefer’. I was doing it for my sake, not theirs. I noticed how reluctant some people were to shake hands, I understood the struggle they were having.
It’s very easy to go into a session expecting a great deal, imagining that all obstacles can be overcome, that people will participate. It’s only now that I understand how hard this can be for people.
So, how does this change my attitude to sessions. I accept people may not want to join in with movement. I chat to them instead. One lady told me that she had had a stroke and couldn’t move one side. I told her I had a brain tumour and had had the same thing. She started to move the side she could. More than anything I understand the sadness of your body declining in health and there is not a damn thing you can do about it.
Seven weeks later I consider myself lucky. My symptoms have improved by about 95%. I was enjoying doing sessions and applying the new found wisdom I had, a new empathy and understanding I had with the residents. But then Coronavirus hit, and I was too much of a risk to residents, all sessions stopped.
So now I’m at home, watching daytime TV, thinking about the residents I have come to know and love, hoping they are ok. And I’m back on the side of ‘health’, for the moment anyway!
Mel is living with a rare condition called PTEN Syndrome - you can find out more about this and support the charity by clicking here.