MJ Hyland: why I had to write about my MS
Novelist MJ Hyland, who has multiple sclerosis, explains her decision to write about it for Granta magazine
Interview by William Skidelsky
MJ Hyland: 'I wanted to understand why I was afraid for people to know.' Photograph: Murdo Macleod
Despite its subject matter, your piece, to me, ends up feeling very uplifting. Was that your intention?
I meant it to be quite frank and clinical about what it means to have MS, the journey from diagnosis through to now, and to say that it's OK. By stint of simply adapting, as humans do, it's not only survivable but there's a way of living with it, and there's hope.
Did the decision to write it take a long time?
I've been thinking about it for more than a year. And thinking about why, in the first place, I didn't want anybody to know the things I've written about. The stupid and warped embarrassment that I felt, the shame about being crippled. I wanted to understand why I was afraid for people to know.
What, now, do you think held you back from telling people?
It didn't go with the person I thought I'd created. I thought I was indestructible, invulnerable. MS and Maria Hyland just seemed completely incompatible. A bizarrely alien marriage. Thanks to MS, I think I'm softer. There was a lot of softening to do, though.
As a writer, was it important to you that your announcement about your illness took a literary form?
Yes. And it had to be a piece of writing that stood up on its own hind legs. I wanted to try and tell a story that didn't hold back. I took four months of thinking and deliberating about what to leave in and what to leave out. It was a lot of work.
Was the experience cathartic?
It was. But it gave me some foul moods. I remembered things I didn't care to remember, and it brought up some grim memories. Because at the time of my decision to write it, about six months ago, I'd kind of forgotten about the the plans for suicide, finding out about lithium and exit bags and so forth.
Has the experience of having MS changed your relationship with writing?
No. Nothing seems to touch that: what I write about and the instinct to write. Though I'm a little more empathetic in my life, I don't think you'll see that in the next novel. It's pretty cruel. Catnip for me is still the dark, the claustrophobic, the perverse. I'm not going to be nicer to my characters because in my day-to-day life I'm a little gentler.
But your writing routine has changed.
Yes, and that's one of the things that put me in that great big dark pit in the first place. The first question I had when I left the neurologist's office was: fucking hell, will I be ever be able to write another novel? Because, if I can't write, I can't live, so then what? Part of the reason why I was able to crawl out of the pit was that I saw that, OK, I will be less productive, but I will get it done. This novel I'm working on, my fourth, it's three and a half years since I started it, and it may be another before it's finished. I used to spend five or six hours a day writing, now it's perhaps two. But I read more, I listen more, I do more eavesdropping. I think my gaze is a little more outward.
Do you feel prepared for the possibility of things getting much worse?
Yeh. [My boyfriend] Trevor is here, and if we need to move or do things to the house to make things more comfortable, it will be all right. I feel quite optimistic because of the obscene amount of luck I've had. Being on this trial, having Professor Giovannoni treating me. Not having any progression in my MS at all for the last four and a half years. Other people who were diagnosed at the same time have very much more disability. It's not my fault, but I feel a little bit weird about the amount of luck I've had.
It seems odd you even talking about luck, when you have this disease in the first place.
Having the disease is something that can befall anybody. But the amount of chance in getting on to the trial, that had a lot to do with having the right kind of personality. And that seems catastrophically unfair.
Can you sum up the worse thing about having MS?
The stuff I miss. For a smoker, and someone who hates vegetables, I really liked doing stuff, and was pretty active. There was a whole list of things I wanted to do. I was going to learn to ski. I was learning to rock climb. I climbed a bit of a Dolomite in 2007, and loved it. Now I'll just read more books. That'll do.
I meant it to be quite frank and clinical about what it means to have MS, the journey from diagnosis through to now, and to say that it's OK. By stint of simply adapting, as humans do, it's not only survivable but there's a way of living with it, and there's hope.
Did the decision to write it take a long time?
I've been thinking about it for more than a year. And thinking about why, in the first place, I didn't want anybody to know the things I've written about. The stupid and warped embarrassment that I felt, the shame about being crippled. I wanted to understand why I was afraid for people to know.
What, now, do you think held you back from telling people?
It didn't go with the person I thought I'd created. I thought I was indestructible, invulnerable. MS and Maria Hyland just seemed completely incompatible. A bizarrely alien marriage. Thanks to MS, I think I'm softer. There was a lot of softening to do, though.
As a writer, was it important to you that your announcement about your illness took a literary form?
Yes. And it had to be a piece of writing that stood up on its own hind legs. I wanted to try and tell a story that didn't hold back. I took four months of thinking and deliberating about what to leave in and what to leave out. It was a lot of work.
Was the experience cathartic?
It was. But it gave me some foul moods. I remembered things I didn't care to remember, and it brought up some grim memories. Because at the time of my decision to write it, about six months ago, I'd kind of forgotten about the the plans for suicide, finding out about lithium and exit bags and so forth.
Has the experience of having MS changed your relationship with writing?
No. Nothing seems to touch that: what I write about and the instinct to write. Though I'm a little more empathetic in my life, I don't think you'll see that in the next novel. It's pretty cruel. Catnip for me is still the dark, the claustrophobic, the perverse. I'm not going to be nicer to my characters because in my day-to-day life I'm a little gentler.
But your writing routine has changed.
Yes, and that's one of the things that put me in that great big dark pit in the first place. The first question I had when I left the neurologist's office was: fucking hell, will I be ever be able to write another novel? Because, if I can't write, I can't live, so then what? Part of the reason why I was able to crawl out of the pit was that I saw that, OK, I will be less productive, but I will get it done. This novel I'm working on, my fourth, it's three and a half years since I started it, and it may be another before it's finished. I used to spend five or six hours a day writing, now it's perhaps two. But I read more, I listen more, I do more eavesdropping. I think my gaze is a little more outward.
Do you feel prepared for the possibility of things getting much worse?
Yeh. [My boyfriend] Trevor is here, and if we need to move or do things to the house to make things more comfortable, it will be all right. I feel quite optimistic because of the obscene amount of luck I've had. Being on this trial, having Professor Giovannoni treating me. Not having any progression in my MS at all for the last four and a half years. Other people who were diagnosed at the same time have very much more disability. It's not my fault, but I feel a little bit weird about the amount of luck I've had.
It seems odd you even talking about luck, when you have this disease in the first place.
Having the disease is something that can befall anybody. But the amount of chance in getting on to the trial, that had a lot to do with having the right kind of personality. And that seems catastrophically unfair.
Can you sum up the worse thing about having MS?
The stuff I miss. For a smoker, and someone who hates vegetables, I really liked doing stuff, and was pretty active. There was a whole list of things I wanted to do. I was going to learn to ski. I was learning to rock climb. I climbed a bit of a Dolomite in 2007, and loved it. Now I'll just read more books. That'll do.
MJ Hyland: why I had to write about my MS | Books | The Observer
LINK: http://www.guardian.co.uk/books/2012/aug/12/mj-hyland-multiple-sclerosis
Hi,
ReplyDeleteHealthline just launched a video campaign for MS called "You've Got This" where individuals living with MS can record a short video to give hope and inspiration those recently diagnosed with MS.
You can visit the homepage and check out videos from the campaign here: http://www.healthline.com/health/multiple-sclerosis/youve-got-this
We will be donating $10 for every submitted campaign to the National MS Society, so the more exposure the campaign gets the more the videos we'll receive and the more Healthline can donate to MS research, support groups, treatment programs, and more.
We would appreciate if you could help spread the word about this by sharing the You've Got This with friends and followers or include the campaign as a resource on your page: http://myfawltywiring.blogspot.com/2012/08/mj-hyland-why-i-had-to-write-about-my.html
Please let me know if this is possible and if you have any questions. And, if you know anyone that would be interested in submitting a video, please encourage them to do so.
Best,
Maggie Danhakl • Assistant Marketing Manager
p: 415-281-3124 f: 415-281-3199
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