So I wake up last Sunday night and my back is in spasm. I suppose it’s not surprising. There is a theory that stress will do that to you. But I also know I did something to bring it on. I can’t exactly remember what that was, but some awkward movement, some twist and pull finished it off. The upshot was two days off work and a visit to my physiotherapist. So, he tells me my pelvis is out of alignment and one leg is longer than the other. I have been advised by a colleague to acquire a parrot. Thanks Susan. Exercise is good – walking especially. Some gentle back exercises. No Pilates for the moment (actually I haven’t been to Pilates in ages) no massage – that would be the wrong thing. There is lots of inflammation, so I have to wait for that to go down. It’s getting better and I went to work on Friday. It was painful to drive, but I could actually do it. I couldn’t have driven on Monday, that’s for sure.
Anyway, it gave me a fresh insight into one aspect of Roch’s condition. When you can’t do things for yourself and you have to rely on other people, it’s hard. No bending down, no lifting, no reaching or stretching. You’d think I’d be grateful as it meant there were so many jobs around the house that I couldn’t do. But I just found it frustrating to wait for Tom or Kate to do them instead and I certainly don’t have Roch’s patience, as he waits for tasks to be carried out for him. We were like two unfit ninety year olds this week, shuffling slowly and painfully around, easing in and out of chairs.
On Thursday the lovely Shelley (Occupational Therapist) arrived with someone from an equipment supplier, so that Roch could scope out a new piece of equipment – planning for the future. There we were, as I say, like two ninety year olds, gazing at what was basically a hospital commode in our living room. Of course, it makes sense. Before a hoist is needed, we’ll need to be able to shift Roch onto a moveable toilet frame and it was important to take measurements and discuss requirements, including add-ons for different stages (like neck support). They are ordering a commode frame which can be wheeled over the bio bidet, or used with a pan in the bedroom, or used without the pan to wheel Roch into the shower. It makes perfect sense and still we gazed in a kind of depressed disbelief. I’d say it felt like we were practising for old age, except it isn’t, is it? At least, not in Roch's case. Funny, an acquaintance asked me how my husband was recently and then told me that she’d watched a programme about the care of the elderly. She said it made her cry. I looked at her for a moment. I saw how she had made the connection, but it still made me cross. I told her “Roch is 50.”
Anyway, Shelley was lovely and made it much easier to contemplate and discuss the use of commodes. I’m not sure her companion was quite prepared for Roch’s question about how to deal with the smell. It’s a good question. He doesn’t want the downstairs of our house to smell like crap. Shelley suggested the match trick. Light a match and blow it out, the sulphur smell helps to mask the stink. Like Scarlett O’Hara, I won’t think about that now. Monika, I will cross that bridge when I come to it.
Credit where credit is due, Shelley is determined that we will be prepared and that the right equipment will be available when it is needed and with not a moment’s delay. She knows what motor neurone disease is.
But I looked at that commode and I thought of other wives, other partners who care for their loved ones with motor neurone disease. I thought of carers whose partners are further along in the journey than Roch. We are following the same path. I know for them there are days spent in a seemingly endless cycle of transfers on and off the commode, wiping, cleaning. They say that some days are harder to bear than others. We’ve talked about the ‘crushing sadness’ of watching the physical disintegration of our partners. It’s hard for anyone else to understand what that's like.
We weep and we wipe. That’s what MND wives (and MND husbands and partners) do. I believe that there is a special kind of love in this and a special kind of courage. This is sharing the darkness.
Mother Teresa said “Not all of us can do great things, but we can do small things with great love.”
That's all we can do. The great things go down in history, are recorded on film, make the headlines and that's as it should be. They inspire us. But meanwhile, in countless homes all over the world, small things are done every day, with great love and I think that's a great thing.