It’s been a time of epiphany. Certainly for MW. Progressive MS affects MW in a way whereby we know things are deteriorating, which is to say that we deal with the deteriorations on a day-to-day basis, but don’t really notice how things have worsened. The times we notice the deteriorations are:
- when we see someone who we’ve not seen for a while (and is honest enough not to resort to the catch-all “ooh, you look well” in the absence of anything else to say), and
- when MW can no longer do something that she could previously do.
Recently, there have been quite a few times like those at number two. I’ve written in previous posts that MW’s legs only move through spasm but I’ve not made a point of highlighting this to her. Due to the fact that I have a fair idea what reaction will follow. Besides, I’d feel a proper shit for ultimately saying, “hey, your legs don’t work now”. No matter how delicately you try to phrase it, you’re pointing out something very distressing.
There was no need for me, or anyone, to point this out to MW this month. She’s taken to trying to move her legs because she now realises that she can’t. And she gets upset and frustrated. Which makes her try harder, which makes her more upset and frustrated when she can’t, which makes her try harder….. And so on, and so on. As I wrote right at the beginning of this blog, I have no idea how it feels to have MS or any other disability. I don’t know how it feels to lose the ability to do those things that most take for granted - walking, eating, writing, etc. I’m not going to try to guess how it feels because I don’t feel it. I can tell you how I feel to witness someone going through it or how I feel dealing with things as a carer. And I can write about how MW reacts to the realisation that these things are taken from her. But I don’t know how MW feels.
When I say she gets “upset and frustrated”, I’m really skimming over a wide range of emotions. First, there was mild amusement. Like when you try any challenge for the first time. This quickly passed into more determination. I could see the effort and determination she was putting into trying to move her legs. I saw that any response on their behalf would have satisfied her - a challenge passed. But the more the cycle continued - re-doubled effort to no avail - the less animated the response was. The more resigned the tone of speech. The quieter the report of realisation.
It’s one thing to try and get a handle on your own feelings. It’s another to try to be a support to someone else when you know that, “it’ll be alright”, are pretty much the most hollow and useless words you’ve got, yet they’re the first that spring to mind. What the hell do I say? What do you want to hear when you’re in that situation? Each epiphany is like a bereavement insofar as they are realisations of something lost. MW deals with it in the best way she can. She’s remarkably stoic. I don’t know if I could deal with it all with the same spirit.
There have been other epiphanies this month. MW’s Dad is pretty ill. He has leukaemia and his blood count has dipped very low recently. He has also been diagnosed with shingles which may or may not have a basis on or connection to his leukaemia. MW hasn’t seen her Dad for two years and she’s getting more concerned that she won’t see him again. He’s in his 70s, which isn’t the oldest parent you’ve heard of, but combine his age with his condition and you can understand her fears. We’re trying to organise a trip to the other end of the country to visit her parents. This feels like positive action so isn’t quite so sombre.
It was my birthday this month and MW got me a card. But when it came to writing it, she couldn’t. Her arm strength and control have now deteriorated to the point where she can’t write legibly. I’d have thought that this would have upset her more than it did. She apologised for having to get help with her message in the card and for her inability to sign it legibly. It didn’t matter to me but she was still very apologetic. Despite her apology, she didn’t seem quite as upset as she does with her legs. I guess dealing with one epiphany at a time is enough to be going on with.