IamA published author living with Motor Neurone Disease AMA!
My short bio: My name is Sarah Gray and on October 2015 I was diagnosed with progressive muscular atrophy, a type of MND.
For 18 years I was a television editor and cut hundreds of programmes ranging in genre from arts documentary to lifestyle and cookery.
I have been storytelling my whole professional life; working in TV, film and now a full-time writer. I have written two short story collections so far and am currently working on a third.
I'm now adapting to a lot of changes in my life, including my voice recognition software that is the bane of my existence.
I'm happy to talk about my condition and my career so go ahead and ask me anything!
For more info, you can visit my website here
My Proof: Amazon Author Page
I did think of Angel Delight at first. You could possibly drown people in it. Stale pork pies are sturdy and could cause some damage. A massive leg of ham would have to be my weapon of choice. I'd feel like a viking.
What were your initial symptoms that led you to get checked out?
At first I felt random cramps in all areas of my body. I was also exceptionally tired by the end of the day, falling asleep on the sofa. Something I'd never done before. And noticing that I was slower on my bike whilst cycling.
Then as it got worse, I felt a heaviness in my limbs and I eventually found that I had no strength to lift myself off the floor.
How do they diagnose MND? What do they rule out?
It's a series of different tests determining whether the problem is with the nerves or with the muscles. The consultant then diagnoses on the basis of these results.
You're not really told what they're ruling out. You can never be sure with MND so the doctors would have to be pretty confident before ruling anything out. However certain things do come up, for example whether the nerve damage is peripheral or central and that excludes certain conditions.
I am curious if they tested for any tick borne diseases. I have heard Lyme can cause these kinds of symptoms. My daughter has 3 tick borne diseases. They were undiagnosed for over 10 years despite dozens of specialists. Finally got the right doctor. She has been in treatment a year now. Finally able to get out a little now. Just throwing that out there as a thought.
Wow. Sorry about your daughter's horrible experience but as far as I know I have never been tested for it. I'm glad she's able to get out a bit more now.
My friend's sister just recieved her MND diagnosis, do you have any tips for her, him or me?
First of all, I'm deeply sorry. It's awful.
Being pragmatic and taking one day at a time is helpful but also allowing the feelings of sadness and anger to be expressed. People will wanna fix but they can't and just sitting with someone in their pain can be very helpful.
Make the most of your time while your function is good. You may not feel like it when you feel sad but if you can still swim, swim.
Showing how much you love someone is really important. I found that it helped to know that people cared and that my life meant something to them. So if you have something to say, say it sooner rather than later.
Offer practical help, even if its small. Taking away some of the burden is a tremendous help.
Are you in the UK? Because there is a load utilities that you should take advantage of as early as possible. Anything to make your life that little bit easier.
How did you get your book published?
It's a case of 'who you know' I'm afraid. I had a friend who was a publisher and she loved what I was writing and was happy to take a risk publishing my work.
How did you get a job as a film/TV editor?
I'd graduated from University for two years and was working in a futon shop. Being desperate, I just sent out a load of CV's to production companies that I knew had - well - productions. I included examples of writing I'd done when doing work experience on a local newspaper to show I was serious. These were the days of photocopying and handing out printed CVs. One evening I got a call from a production manager who needed a runner for the next day. I took a day off sick from work and went and did my damnedest to show them I was employable. They offered me a job that evening.
Is there any money in short story collections? Do you see your stories as stepping stones to a larger work or is it your medium of choice?
The percentage margin is the same as novels, but you tend to sell less units. Sadly, it seems there is more demand for long form stories than short.
Unfortunately it seems that for a short story to gain attention it must have been either published in a magazine or has been adapted into TV or film.
I'm told my stories are very visual so I've always hoped that someone would pick them up for adaptation.
And that is a great question! I don't see them as stepping stones. I love writing short stories but I do hope to write something longer. However I tend to think all ideas have a natural length so I write to the ideas not the other way around.
What would be your advice for a teen who wants to be an author when they're older?
Read as much as possible and consume stories in all different formats. (TV, Film, Radio, Theatre etc)
Join a creative writing club or group. Sharing your work is the best way of getting feedback. I know that can seem a bit daunting at first. Learn to deal with criticism constructively. You're not always gonna agree with what people might say about your writing but learning to assess criticism is a skill in itself.
It sometimes feels like there are too many books in the world, don't let that stop you. You have to develop your own voice with time and effort. Writing well is hard, stick at it.
What is your voice to text choice for software?
Dragon software. It was supplied by my local specialist occupational therapists and I was reassured that it is the industry standard.
I've been frustrated when using Dragon and have given up, now several times, with getting the hang of it. I get many errors in the speech to text and commands. Did you experience this? Any suggestions?
Yes!! Took me ages to learn it. And I have had many frustrating moments. I've only been able to do a few sentences at a time but after a few months I've managed to get the hang of it. But it still makes lots of mistakes.
I don't have any particular advice except for to persevere. I'm gonna try and learn all the extra functions that it'll make my experience easier. If I find any that are helpful I'll let you know.
At what age were you diagnosed with MND? How has it affected your life so far, And how have you over come it in the past?
I was 43 when I was diagnosed. It was devastating and I'm still adjusting to my significantly reduced lifespan and the continual deterioration of my body.
I'm grieving on two levels. First for my life and second, for the loss of function.
I overcome it by living day to day as much as possible and focusing on the things that are possible.
Continuing with my writing ensures I'm still engaged with life and producing something.
I've had a lot of support from my partner, my family and my friends.
It ain't over 'til it's over. So I'm gonna keep going 'til then.
Im sorry to hear that, but I'm glad you found solidarity in your loved ones! I look forward to reading your book. The way you described the time you watched dawn of the dead got to me. Thank you!
Thank you, really pleased you like it.
That's an amazing story. I cant imagine knowing about my reduced lifespan. This must be nerve wrecking on countless levels. This makes me intrigued to read your books! They MUST be interesting.
Thank you. I've used some of the darker experiences to inspire my writing. If you do read it let me know your thoughts.
Any books you personally recommend?
Depends on what you like of course but I'd recommend the books I've mentioned in my previous comment.
I'd also recommend Stella Gibbons' Westwood and Cold Comfort Farm. B.S. Johnson's Christie Malry's Own Double-Entry. W.G. Sebald's Austerlitz. And finally, one of the funniest books I've read Three Men in a Boat by Jerome K. Jerome.
That would cover most bases for most tastes.
Hi Sarah, thank you for doing this AMA. I'm very interested in your writing/books. Congratulations on your many achievements! I am so sorry about your MND as it is a wicked disease. I have a lesion on my upper motor neuron so it causes symptoms but it is not imminently life-threatening. I do recognize I'm lucky that way.
My question is - what suggestions do you have for someone who wants to become a better storytelling writer? Do you have favorite resources, books, groups, etc? I have experience with technical writing in my career. I kept a small, anonymous blog that several people (particularly medical professionals) enjoyed when I was first finding out about my illness.
I abandoned my blog when writing anonymously became conflicting. I feared people in my career world would discover it and see me as weak and incompetent due to my limitations and physical disability. Anonymity is not as big of a worry for me anymore and I'd like to get back to writing. I'm not sure if I can learn to tell better stories but I'd like to try. Do you think a person can learn to tell better stories?
I hope I have not asked too much nor shared too much. The details seemed somewhat relevant. I'm grateful to you for sharing your experiences and expertise through your writing and this AMA. Sending good vibes your way.
Thank you for sharing your experience. I know its difficult getting a hard diagnosis.
I definitely think you can improve your writing with practise. It depends on what you want to write, if you want to write your blog then I guess that is the best way to develop your skills. There are classes for life writing which can be helpful. It can help with sharing experiences in ways of writing prose.
If you wanna write fiction. Then start with reading as much as you can. All the formats you can. TV, Film, Theatre etc. Again, short story writing classes are amazing chances to be able to share your stories with your peers. If you want a great book about writing, read Writing down the Bones by Natalie Goldberg. Its a really helpful guide in just getting stuff done. Its full of lots of tips that I've found immensely useful. Sharing your work with people you trust is also a great way of getting feedback. Although learning critical judgement is a skill and you will need to be able to take constructive criticism to get better. Writing is about sharing what you've learnt and depending on how you do that. All experiences are good material even if it feels raw at the time.
Good luck and remember to keep practising!
What is your favorite book?
Oh my god there are just so many. William Makepeace Thackeray's Vanity Fair is the first book that comes to mind. I thought it would be a typical classic but was surprised that it actually turned out be funny with a rip-roaring story. Becky Sharp is an enduringly charming and devious protagonist.
Some honourable mentions: Shirley Jackson's We Have Always Lived in the Castle, Joan Lindsay's Picnic at Hanging Rock and all the short stories of Katherine Mansfield.
If you are in the middle of a food fight to the death, what food item would be your weapon of choice?
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