So this post has been a long time coming. It needed to be written, but I kept putting it off because frankly, I didn’t know how to write it. I still don’t, but I’m going to have a go anyway. I hope you understand.
I’m not a fast writer. I have perfectionist tendencies, which mean I don’t let go of anything until I’m absolutely sure it’s the best I can possibly make it. That goes double for creative work. What it goes for for the Wild Hunt Quartet, the story I have wanted to tell for over 25 years, well. I’m not sure there are enough zeroes in the world. That’s how much it means to me.
I’m also ill, and have been so for a long time. Most of you will already know this, because although I don’t shout it from the rooftops, it’s not exactly a secret. I have multiple sclerosis. Officially, I was diagnosed in 2004, but the symptoms go back almost as far as the origins of The Wild Hunt Quartet. There’s an irony, eh?
MS has approximately the same effect on my nervous system as mice do on your house’s wiring
Anyway, for those that don’t know, MS is an auto-immune condition in which my body attacks its own nerve cells, slowly stripping them of their protective layer of myelin. Myelin works like electric cable insulation, so MS has approximately the same effect on my nervous system as mice do on your house’s wiring, only you can’t call Pest-B-Gone and hire an electrician to put it right. It’s chronic, progressive and disabling.
I’ve mostly come to terms with it, though on bad days I still get angry and bitter when I can’t do something trivial like get the top off a jar, carry a cup of tea without spilling it, or get to the bathroom in time. There’s more, and worse, but that’ll do for today.
When I was first diagnosed, the disease was relapsing-remitting. I’d have flare-ups of symptoms, like visual disturbances or numbness, then periods of no noticeable disease activity. Rinse and repeat. Over time, as the scarring built up on the nerve fibres, symptoms started to stick around. My balance and mobility have deteriorated markedly over the last few years. My fatigue has increased (and fatigue in MS is not ‘feeling a bit tired’, it’s ‘can no longer stand because after a few minutes the axial muscles just don’t work any more’). And the cognitive dysfunction has got worse.
Cognitive problems in MS patients are very common. These can range from poor concentration, difficulty making decisions and general ‘cog fog’ to mood swings, depression and memory issues. Pick one from the list and I’ve probably had it. Certainly depression. Feeling fat and useless, frustrated and foggy and exhausted is pretty much guaranteed to do a number on your mood.
© Ingvald Kaldhussater | ID 514554 | Dreamstime Stock Photos
All of which brings me to THE DRAGON HOUSE. Just as a book, it has its challenges. It’s the last one, the conclusion to the series. The one I have the highest hopes and deepest fears for. It’s the culmination of every decision I’ve made heretofore in the telling, the drop-box for all the “I’ll figure that out in the next book”, the firing of Chekhov’s guns, the resolution of every scrap of foreshadowing. As a discovery writer, it’s also the book I knew least about going in.
A big ask, then. And I’m trying to write it whilst dealing with MS that is now secondary progressive. I admit, it has sometimes been overwhelming. I have suffered from creative paralysis. Decision fatigue. Rampant perfectionism and an inability to believe that anything I do will ever, ever be good enough.
If the book’s not done yet, it’s not been because of a lack of effort, believe me. Or any shortage of tears. There simply comes a point where I cannot work any harder, because I simply cannot work. But I keep trying anyway, and that exacts a price.
I will finish this book. This story is my heart-song, my dream; I cannot let these characters down by leaving their tale unfinished. They deserve an ending, and so do all the readers who have come along for the ride. I must just beg your indulgence a little longer.
This story is my heart-song, my dream; I cannot let these characters down
A final few words. I am surrounded with loving support from friends and family. My publisher and agent have been nothing but wonderful. I know I am not alone. This post is not meant to be a play for sympathy, just an explanation. I feel I owe you that. I haven’t kept the blog up to date, despite my best intentions. That’s the thing about missing a deadline; the further past it I go, the less I want to draw attention to myself by mentioning it. The more I’m struggling, the less I feel able to share. My instinct is to hide, to soldier on in isolation. To keep setting myself more deadlines, and keep failing to meet them, so I hide some more.
There are circumstances I cannot change, limitations I will always have to work within, but I will try to do less hiding, going forward.
And I WILL finish this book. You have my word on that.
Sincerely,
Ellie
Yeah. MS sucks rocks not cocks. You may well have seen this site where all (probably) the jokes are by people who know what you are going through: https://multiplesclerosislife.tumblr.com/
Anyways.
I have just picked up the first book of this series and could not put it down. Of course I am now going out to rent the next. Your story is beauitfully written and left me with tears and urgency to continue. Which brought me to this blog literally minutes after finishing The Songs of the Earth. I needed to know there were going to be books ahead to quench this need for this story. Thank you for sharing about your struggle. My sister was diagnosed with MS five years ago at age 21 and it is nothing short of infuriating and debilitating. I wish you many good days ahead that you are able to enjoy your life… if that means finishing book 4 in 5 more years, or not at all… you still have gained another avid fan of your work.
My prayers are with you and for you. May the Peace of God which defies all understanding be yours, and bring you the comfort and the relief you need during throughout your illness. You will accomplish what you set out to accomplish, but it will happen in Gods’ time not yours, and Gods’ time is always ON TIME so be cheered.