A Penny Ode

I’m not a particularly big Van Morrison fan; it’s just that he’s always managed to worm his way into my music collection. And it’s not just my iPod, as it’s a safe bet that I’ll hear him before too long on those rare occasions when I tune in to a radio station that broadcasts popular music. It’s as if his job is to remind, or rather insist and nag me, to live in the present tense. “These are the days, the time is now. There’s only here, there’s only now.”

Being in my later forties, there are certain inevitabilities that I face. My arms are now far too short when I hold up a menu to read in a restaurant, my bladder has long been too weak to afford me a whole night’s sleep and a variety of aches and pains cover my body like confetti. However, my memory is mostly intact and I note with neither joy nor sadness that it was exactly twenty years ago today that I woke up and had a rather eventful Mayday that changed my life. Living with Multiple Sclerosis is a topic I seldom bring up, as I found out almost immediately that it’s a conversation piece most often wedged somewhere between a faux-pas and a hot potato. Although its arrival had a tremendous impact on me at the time, the ramifications have since softened into the landscape. The combination of two decades passing, an extraordinary wife, two wonderful children and the strongest vision of the future that I have yet known have perhaps conspired to make it all feel slightly irrelevant by comparison. However once in a while someone offers me a penny for my thoughts on the matter, and so here they are.

I grew up with films like Love Story and Terms of Endearment, and used to imagine that there was something deeply moving about having a chronic medical condition when surrounded by loving friends and family. I then learned very quickly that this is not the case. At least, not for me and not by a long shot. What these and similar films never want to portray is how utterly tedious much of it can be; after all, how moving is a character who sits on the loo in the middle of the night for over an hour desperate, but unable, to pee? Or how frustrating is it to have confirmed that a cocktail of overt symptoms like fatigue, slurred speech and poor balance accompanied by a smattering of needle marks are more likely to provoke prejudice rather than consideration?

Alfred Hitchcock once said, “theatre is life with the boring bits taken out” and so good drama is. I consider it rather ironic to have been diagnosed with a chronic illness just days after playing a character who was dying from one, but to learn that art is artifice through such a contrast can be a hard lesson to learn for one as young and naive as I was at the time.

With hindsight I now know it was this realisation, more than my lack of talent, that brought my love affair with acting to an amicable end during my final days at drama school. John, one of my teachers who is himself no stranger to the problems of autoimmunity, acknowledged my diagnosis thoughtfully one evening by wishing me a great deal of luck as we queued for a pint in the local pub; a tender moment I will never forget. Many years before then, I remember my mother referring to me as a “bum in the butter” child and so far she has largely been proved right, given that I have been luckier than most with my illness. Of course I experience a wide range of symptoms from the mildly irritating to the frustrating and restrictive, and it is likely there is worse ahead, but nothing has yet come anywhere close to the one that doesn’t make good television; the gnawing sense of futility, impotence and perhaps a twisted sense of guilt that comes from being the one with the disease that has to watch those around you without it accept that they cannot take it away.

Since they were born, Barbara and I have shared looking after our children as much as my itinerant working life will allow, and when home I like to make up for my absences by doing as much as possible. With parenting tasks ranging from the unpleasant chore of changing nappies through to the abandon of play, I see each one as a chance to give health in the form of cleanliness, comfort or some other small and perhaps inconsequential way. However, none is more precious to me than the one that follows a piercing cry in the middle of the night denoting nightmare, toothache or fever. The chance to restore safety and calm by creeping through the dark, searching for them amongst their sheets and folding them into my arms is a joy that I treasure like few others.

Van Morrison may have provided the obvious soundtrack to our lives here, but firmly lodged in my memory is a ballad by another Irish songwriter called Percy French. It’s about a coach driver named Paddy Reilly who emigrates from Ireland to Scotland, and it appears in the script for Harold Pinter’s play The Birthday Party, a production of which I was involved with over thirty years ago. Often I hum it to myself, and when I sing it out loud it always appears with a cod Irish accent much to Barbara’s amusement. Now, when I cuddle my son or daughter in the small hours and gently rock them to and fro, this slightly altered version is what I half-sing half- murmur into their hair as they press their head into my chest and we wait for the demons to leave and The Good Life to resume. That’s it for these letters; I’ll have that penny now.

Oh, the Garden of Eden has vanished they say,
But I know the lie of it still.
Just turn to the left at the foot of Ben Clay,
And stop when halfway to Cootehill.
‘Tis there you will find it I know sure enough,
And it’s whispering over to me;
Come back Red and Railay to Ballyjamesduff,
Come home Red and Railay to me.