In august 2012 I recorded this article/interview. At that time I wasn't doing much with Twitter but lately I spend an hour or less a day reading tweets. She mentions being treated by professor Giovanni, who is one of the people I follow on twitter. Just a co-incidence when I searched my own blog and her interview came up and I re-read it.
On twitter, the good professor has many girls he follows, probably since women are the predominent m.s. patients. I should have been following him all along because he is an expert about m.s. and the girls are probably his patients, like Ms. Hyland below.
Not taking note of his name at the time, probably shows a pattern of denial when it comes to my m.s. --- hoping that ignoring the disease will make it go away.
In the article she talks about being optomistic because she had good luck in life. Maybe many people invoke the same magical thinking when it comes to incurable diseases that 'drag on' for the rest of their lives.
My recent thoughts are about when do we lose the optimism we need while holding out for an effective treatment. Is this when denial about having the disease and hoping for a medical research breakthrough encourages personal experiments with overlooked therapies, perhaps from alternative medicine. Medical cannabis is already being used to treat spasticity.
Professor Gavin Giovannoni, Chief Clinician
Professor Giovannoni is a multiple sclerosis clinician and world-renowned MS clinical researcher, who is Head of Academic Neurosciences at Barts and The London Center for Neurosciences. Professor Giovannoni provides highly valuable real-world clinical input as well as clinical trials experience and facilities. His research interests include neuroimmunology; multiple sclerosis and other inflammatory disorders of the central nervous system, with particular focus on neuroprotective and neurorestorative therapies in multiple sclerosis..................................
M. J. Hyland
- M.J. Hyland is an ex-lawyer and the author of three multi-award-winning novels: How the Light Gets In, Carry Me Down and This is How. Hyland is a lecturer in creative writing in the Centre for New Writing at the University of Manchester. Carr…
M.J. Hyland is an ex-lawyer and the author of three multi-award-winning novels: How the Light Gets In, Carry Me Down and This is How. Hyland is a lecturer in creative writing in the Centre for New Writing at the University of Manchester. Carry Me Down was shortlisted for the Man Booker Prize ahd won both the Hawthornden Prize and the Encore Prize.
- en.wikipedia.org· Text under CC-BY-SA license
- Born: Jun 6, 1968 (age 46) · London, United Kingdom
- Education: University of Melbourne
- Written works: Carry Me Down (2006) · How the Light Gets In
- Nominations: Man Booker Prize (2006 - 2006)
MJ Hyland: why I had to write about my MS | Books | The Observer
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
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
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