“Wonderfully Clear”: Christian Donlon on MS and parenting

“My daughter took her first steps on the day I was diagnosed—a juxtaposition so perfect, so trite, so filled with the tacky artifice of real life that I am generally too embarrassed to tell anybody about it.”

Journalist Christian Donlon writes about his MS and his daughter’s development with incredible grace and candor in his memoir, The Inward Empire: Mapping the Worlds of Mortality and Fatherhood, a Summer 2018 Discover Great New Writers selection that’s often very funny despite its serious subject. We asked Christian how he keeps his sense of humor in the midst of chaos and pain, and this is what he said:

My daughter Leontine, who is now almost five, has just discovered jokes. Well, it is a partial discovery at least. She gets the two-part format of many jokes and she gets the social anxiety involved. (I can tell, after she has said the joke’s opener, that she is filled with tension regarding the closer; she understands innately that getting a joke right is a terribly serious business.) But I don’t know if she knows why the jokes she has learned are funny—why it is funny, say, that the way to get Pikachu onto a bus is to poke him on—and she doesn’t understand that a joke is a bit like a firework: it can only go off once with any particular audience.

The thing is, jokes are hardly essential with a girl like Leon. She has been making me laugh since she was born, it seems. Since she could express herself I got a sense that here was a girl who saw the world in a slightly different way, who would watch most things out of the corner of her eye and find them ridiculous. Ridiculous and strange. Out walking on the way to school recently, my wife and Leon found one of Leon’s name labels long detached from whatever bag or lunchbox it had once been fixed to and blowing around in the wind. “That’s strange?” Leon asked, more for confirmation of her reading of it than anything else. And then: “I love it when things are strange.”

I think my daughter’s presence in my life probably explains why people sometimes tell me that I have written a funny book, or rather that my book has made them laugh despite themselves. I am always delighted to hear this, even if it was not entirely my intention. On the surface my book is about fairly serious things: it’s about my diagnosis, shortly after my daughter’s birth, with multiple sclerosis, a maddeningly unpredictable and frequently brutal neurological disease in which the protective coatings of nerve cells in the brain and spinal cord are accidentally shredded by the immune system. When you have MS, people start to describe you as a sufferer, and so I assumed that I had written a sufferer’s book.

If I haven’t, it’s because of Leon’s influence. Because of my fantastic, unprecedented, bewildering, and glorious daughter who has grown up alongside my disease, and whose explosion of life and new ideas and new cognitive abilities has been a vital pleasure to me as my own mental equipment has started to falter. I have wanted to mope theatrically at times, but it is hard to mope when you have a daughter who wants you to show them how to draw the really hard parts of a pony – always the back hooves—and who finds your moping hilarious anyway. Even at its worst, when I am stuck in bed with sore legs or muddled vision—the sheer range of things that MS can do is baffling—I can hear her elsewhere in our house, arguing with a cat or mis-singing the latest chart songs with a wonderful scatterbrained innocence.

Practically, I would say two things about all this. Firstly, while I worry about my own diminishing agency as an MS patient who is also a father of a young child, Leon makes it wonderfully clear what my priorities are, and she gives me the humour I think you need to hold onto when you have been dropped into the bewildering world of neurology, where simple things are suddenly not so simple, and when the entire landscape around you can occasionally feel like a Victorian stage magician’s set filled with trick staircases and tilted mirrors.

Secondly, I was talking with another MS patient the other day and we remarked on the fact that public understanding of this disease has progressed over the last few years from pretty much nothing to an appreciation that MS is a very complicated thing. Then, public understanding has sort of halted, and perhaps people are tempted to look away from MS because complicated things often make them feel foolish and powerless and sad.

Humour, though, or at least a certain amount of easy wit, or a willingness to admit that some awful things do have undeniably funny aspects, might be a good way to make people look again at a thing they have already decided they don’t want to look at. A sense of humour—often, more specifically, my daughter’s sense of humour—has not just helped me understand my new world a little more, it might allow other people in, too.

 

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