I\’ve been writing here very little of late, and I feel I owe an explanation to those of you who have kindly clicked and read and kept me writing during the past couple of years.
The one thing I have been reluctant to write about is the principal fact in my life–that I have, and have had for two decades, Chronic Fatigue Syndrome (CFS). Why write about something that I am, literally and figuratively, sick of?
One reason for my reluctance is that I find the few books that have been written about CFS very difficult to read. Some are medical in orientation and, because there is no cure for the disease, necessarily depressing. Others vent a mostly justified anger at the medical and political establishment\’s mismanagement of an illness that affects an estimated one million people in the U.S. alone. And others are self-help texts advising one to curtail one\’s ambitions, avoid physical or mental exertion, and try to live in the moment.
I thought that there might be room for a different kind of book–a non-medical, non-didactic account of one person\’s experience of the illness that would not be devoid of humor and in which other sufferers might find themselves reflected and perhaps consoled. And because CFS encapsulates many of the conditions–loss of energy, loss of power, isolation–with which everyone sooner or later must come to terms, I believe that such a book might find application beyond the CFS community.
So I\’ve been writing this thing, and it\’s not been easy. For one thing, most people who sit down to write their memoirs plan to tell about things that happened to them, or that they made happen–how they crossed the Atlantic in a raft, climbed the Himalayas, raised quintuplets. In my case, I\’m writing about an event that caused things to stop happening to me, and caused me to stop making anything happen. I have lots of stories to tell about my life before CFS–but after CFS, not many. And because of the mental fog that accompanies the disease, my memories of those nothing-happening years are few and far between.
Why then write about this at all? Because, although I would never have chosen it, it is my adventure, my crossing of the Atlantic in a raft, my climb of the Himalayas.
I hope the story will not be too dour or dolorous. There will be plenty of dogs and goats and chickens and gardening mishaps to lighten things along the way. We\’ll see–I am yet at what is known in the trade as the \”shitty first draft.\”
Meanwhile, I don\’t intend to abandon this blog, and I hope that you will not abandon me. In the coming months I will be adding, to my stories of dog training and Vermont living, bits about my writerly struggles, defeats, and resurrections. Wish me luck.
I do wish you luck. And, as you know, I feel your pain. I'm glad you're writing this–for you, and for your readers. I suspect it will take on a life of its own–your own–and encompass a lot more than CFS (as if that weren't enough).
So Awesome!!! I will buy it and devour it as soon as it is published. You are an amazing writer, so any topic you would pick would be a bestseller in my opinion. Good luck!
Good for you, Lali. I will be waiting for your posts when you have the time.My reasons for not posting much are much more mundane.
i think this is a great idea. and you should feel free to try anything out on us that you want. and don't worry about the blog—-blog when you have time and inclination. we will always be here.
I would read it. Mostly because I've watched my own health deteriorate (and luckily, bounce back when eventually some causes were found) and also am watching a friend deteriorate, but in her case, it is a mystery that has no answers and no turning back. I would read it because I think you would have a Benedictine/Buddhist slant of living life is life well lived. A sort of hope in a small place.
I think it sounds like a brilliant idea. People need the comfort of knowing they're not alone, and that life can still be good. And I guess the effort of writing is so difficult with CFS that there probably aren't too many CFS real life stories out there. I know you don't need luck, but I'll wish it for you anyway. Good luck!I wonder sometimes if I should be writing about my infertility in the same way … but at the moment I'm grappling with something else I haven't really \”come out\” about but is affecting almost every waking moment.
I wish you luck. I think this is a great idea! This sentence struck particularly, of course: \”And because CFS encapsulates many of the conditions–loss of energy, loss of power, isolation–with which everyone sooner or later must come to terms, I believe that such a book might find application beyond the CFS community.\”
Thank you all from the bottom of my heart. Wish me luck, and especially energy!
Hooray for shitty first drafts!
I've mostly known you since CFS, except our adolescence which is always a fog. I think your life and choices are fascinating now. You make me wonder about the adventures you don't remember even more. Here's a blog that you might find interesting and the way she chose to do it : http://bethsabbatical.wordpress.com/I too, like your other devoted followers, will read every word!
mrb, I took a look. Fascinating!
I've had this horror since 1989, and have written about it here and there a bit (mostly on my blog).I'm a novelist; the main character in Pride's Children has CFS, because I believe that an underused and underappreciated way to get around the barriers people put up around their hearts and minds is fiction – and that the fiction must be of the highest possible caliber, or it is too easy to dismiss.Other have taken to memoir, as you have. I hope we all do our bit and people come to have the kind of empathy to support research and we eventually figure this all out, and not just learn to live with it, as so many of us have had to.I don't know what I'd do if I couldn't write.