Arms and the Man
My arms break at least once every month. If it’s not the steel inner skeleton of my myoelectric hands that snaps, the charging points on the arm sockets will themselves fail and need replacing. The overall impact on my daily life is considerable, and I seem to be spending a good 2-3 hours a day trying to troubleshoot problems. Lately I’ve been looking at the latest upgrade which is called ‘bebionic’ – these have the advantage of individually powered fingers and enhanced grip, but you have to make a special individual case to have them funded on the NHS. You have to be ready to fight your ground.
This week my NHS prosthetist arranged for me to meet with technicians from the manufacturers so we could troubleshoot the problems I’ve been having and to talk about the new multi-function hands. It’s an hour and a half’s drive from my house to the Limb Centre on the outskirts of Leicester. It’s just off the M1, there’s lots of traffic. I usually try to get there early because there’s a McDonald’s close by and I like their coffee, but I’m running a little late, so this time I park right outside the clinic and head straight on in.
I’m carrying two spare prosthetic arms, three back-up myoelectric hands and two charging units and a note reminding me what to say. I forget things. My bag is heavy. The technicians have travelled from London. So, this is a big deal for all of us.
I tell them about the problems I’ve been having. On the one hand, I don’t want to sound ungrateful, but on the other, I’m angry about the failing equipment and the feeling I have of how this isolates me and makes my marginal grip on everyday life even more precarious. I have to speak rationally, even though inside I feel a bit desperate.
“…I wake up in the morning, I see the chargers have failed overnight, then I realise I have to go a day without hands. Imagine it.”
I ask about bebionic. I’ve done my research, so by now I know that with the support of my prosthetist, I can put in a request for funding with the local NHS Clinical Commissioning committee. The hands cost £26,000 each, plus, I’d need special arm sockets, warranties. But the technicians aren’t encouraging, telling me that bebionics are even less robust than myoelectric arms – so I could find that they are even less reliable, and that I might have more problems with faults, repairs and servicing.
I spend the rest of the morning waiting whilst they take my existing arms and hands apart and service them. I wait alone in the large room, with plenty of time to think about my rather strange set of circumstances. Sometimes it feels like I’m not Tom Ray in England I’m Tom Hanks on that tropical island, all alone, in Castaway. As usual, I’m disappointed. I was excited to think I could have bebionic hands with fingers that moved individually, and they might make my life more bearable. My hopes and dreams, they’re so fragile, just like my hands, just like my arms. But now, after that conversation, it seems like the chance has gone and I’m just left with the basic equipment, plus this constant, time draining need to get running repairs. Before I leave, they offer me a different version of the myoelectric hands to try, with a faster open/close movement. It’s quick, it’s neat. I’m pleased to take these hands away, I think they’ll work well. Good. OK.
Step back, step forward. Arms and The Man. I carry my shopping bag full of arms and hands back to my Motability Ford Focus. Deep breath, Radio 4, glasses on. Traffic.