Monday 16 May 2016

it's such a feeling that my love, I can't hide...

I caught myself walking around the office like an old man this afternoon: my legs were tired and I seemed to be hobbling around with a stiff-hipped stagger.  Someone saw me and actually asked me if I was okay. This is happening more often.  It's perhaps understandable when you've run twenty-odd miles the day before, but a little bit more worrying when you haven't done anything at all the day before.

Still, given that I went out this evening and ran a comfortable 4-or-so miles at a decent pace, I don't really feel as though I've really got anything much to complain about.

How about, instead of grumbling about something that isn't -- for now, at least -- impinging on the way I choose to live my life... how about I talk about a symptom that might be invisible to you, but that has a subtle impact on me and the lives of the people closest to me?

Whilst I was out on my run this evening, I saw a middle-aged couple walking along the river in the sunshine holding hands.  It was nice, but it made me realise how little I hold hands with my own wife.  I used to quite like holding hands.  It's a simple gesture of affection, but it means so much and I barely do it any more.

Why? Because I've lost sensation in my hands and because it makes holding hands feel weird.  Not nice: weird.  Imagine that.  It was such a nice thing to do.  You totally take it for granted until it's gone.  I wish it was otherwise, but that's the way it is. This same loss of sensation also means that I am starting to struggle with some of the little things that require finer touch control, like the ability to do up the top button on my shirts or the buttons on the end of my duvet cover.  Not really a big deal in the grand scheme of things, I suppose.  In fact, in spite of all this, I still consider myself to be lucky, because my younger brother's MS has robbed him of much more sensation in his hands and he has to use a special keyboard now just to be able to operate a computer.  As ever with MS (or anything in life), you never have to look very far to find someone worse off than yourself, eh?

But yes, I don't really like to hold hands anymore.  In some ways, I find it easy to cope with some of the bigger things that MS has to throw at me... but tonight it's the little things that feel like the biggest loss.


  1. it's a tricky one - the big things for each person will be so different from the next. i guess the things which bother you are the things which bother you - big or small, it sucks.

    i remember when i was diagnosed, the pins and needles in my hands were a massive deal - as a musician, this really put a crimp in what was, at the time, "my very essence" (if that's not too pretentious).

    it still bothers me but one thing i took from some physio to combat foot drop was that it can be possible to reroute neural pathways - after a shower i benefit from aggressively towelling my tardy left foot - rubbing it roughly along the top from ankle to each individual toe for a good few minutes. the same approach tends to work for my hands - and it's something i'll need to focus on as i prepare for a triumphant return to the live arena for IndieTracks later this year (#humblebrag)

    i remember reading a biography of Woody Guthrie a while back - Woody died of Huntington's Chorea, an inherited neurological condition which damages nerve cells in the brain. Woody was an incredible lyricist and writer, engaging in flights of fancy (and fantasy) through the way he used language, and one theory about why he was so original is that his thoughts had to find circuitous routes through the potholes in his brain in order to get his ideas out. so the brain will usually find a way.

    my guitar playing is less than it used to be - but then i'm soon to turn 43 and i have a daughter who rushes in to grab whichever guitar i'm playing when i rehearse - she's not so much about the jamming yet.

    the pins and needles are still there but i find that i can mostly get the messages through - whether through muscle memory or increased sensitivity or whatever. it can feel odd to start with (and be super-frustrating) but eventually it starts to come back.

    I guess that a large part of the joy of holding hands comes through the feel of the other person's hand. but there are other sensations which you will pick up on if you stop and enjoy the moment. and mostly it's the feeling of connection with another person. i'm sure C. misses holding hands with you, too.

  2. I miss holding hands more than I could ever tell you. You have such soft hands, and long cool fingers. But I understand.