MS from the inside

Wed 17 June 2020

I am Grant. I have multiple sclerosis. As well as my physical and mobility problems, I also have cognitive and memory difficulties. My wife, Robyn, is my carer.

She does a great job managing all my medical stuff and remembering everything for me. Robyn also makes sure I’m looking after myself properly – which can be annoying if she reminds me I should have a rest when I’m busy with my woodturning.

I often have trouble getting my thoughts in order and saying what I mean. Sometimes Robyn gets impatient and guesses what I’m struggling to say. This frustrates me and makes me feel like a child.

I remind myself that she only wants to help, and in the end I’m grateful that she knows me well and can work out what I’m trying to tell her.

MS means we can't do so much together

I love my wife but our relationship has changed. We don’t do much together any more. We can’t do the things we used to do: explore nature, go shopping, take long journeys – I can’t walk far, I get tired, my leg swells up.

It bothers me that our life is restricted. So I encourage Robyn to do whatever she wants, like visiting our daughter and grandchildren in London, even though I can’t go with her.

Grant wearing a plaid shirt smiling with a wooden vase he's made on his lathe

Woodwork helps me focus on the good things

I know she doesn’t want to do these things alone, and it makes my heart heavy. And that’s where my woodwork helps me.

I love the feel of the timber as I turn it on the lathe, moulding it into something new. Creating designs for pieces such as segmented bowls occupies my mind, keeps me out of the doldrums. Helps me to focus on the good things in my life.

Robyn on her wedding day with short brown hair in white wedding dress holding hands with Grant who has dark hair and a moustache wearing a grey suit.

I am Robyn. I’m Grant’s wife, and his carer. Grant says I’m good at looking after his needs, but sometimes I get carried away with my role as carer and act like a parent instead.

Life before MS

Before MS, we had grown together into a solid partnership. We had our own hobbies, as well as interests in common.

As husband and wife, we were a good fit.

MS blurs the lines of our relationship

Since MS, I find it difficult to combine our new roles with the existing ones, to negotiate the practical and the intimate: the lines are blurred.

Grant can no longer do big projects around the house like renovations and repairs, so now he commandeers small tasks. I can’t even hang a picture without him appearing and taking control of the hammer and nail.

Most of the time we rub along quite well, but I do get frustrated when he repeatedly asks the same question about what we’re doing or where we’re going.

Growing old in the shadow of MS

I Iove him deeply and comfortably, but I want it to be madly and passionately: I want to still be lovers rather than bedfellows. How well are we negotiating the business of growing old together? I don’t know because we are aging under the shadow of MS.

Every year, I go to London to visit my daughter and her family. I go alone because Grant is unable to travel that far unless he goes business class: we can’t afford that.

Looking beneath the layers of MS

Last time I was in London my son-in-law gave me a gift: a tarot reading.

The reader turned a card that signified the principal male influence in my life, and asked me who it was. I told her about my husband, and how he had changed, and how I sometimes feel as if the man I married is no longer there.

She said, “He is still there. You just have to look for him beneath the MS layers.” When I got home, I did exactly that... I looked for him.

She was right. He is still there.