A day in the life of: Scott Jordan-Harris
28 year old blogger Scott Jordan-Harris spends the majority of his time in bed due to ME and other illnesses. Here he writes about his typical day.
I can wake up at any time, my body can't regulate sleep. For years, I tried to manage my sleep pattern. I kept sleep schedules and 'sleep hygiene' diaries.
On the instruction of an expert, I even put an old-style alarm clock inside an empty biscuit tin to make a huge din so I couldn't sleep through it. It made me so ill I'd vomit on waking. I achieved nothing.
Since abandoning that awful regime, I've been able to write and to live, at least as much as is possible for someone who often can't leave his bed.
I'm sometimes asked to give advice to other ME sufferers. My advice is that you know your body, and your illness, better than anyone. Listen to it and work within its limits.
When I wake, one of my parents will come in to assist me; I've never been well enough to move out of their house.
I'm 28 and I imagine myself unchanged at 38. At 48, I have a terror of robbing my parents of their retirement; they have a terror that my illness will rob me of the rest of my life. But I try not to think in those terms.
I don't have a parallel life in which I'm out doing all the things I 'should' be doing; I have only the life I'm living now.
I begin my day - whenever my day begins - by assessing submissions for the Spectator arts blog. If I have the energy, I move on to other editing projects. Other times I write something - those are the best times.
Some writers are impossibly particular about the type of pen they use, I'm impossibly particular about the type of tea tray. It has to be sturdy and free-standing: broad enough to accommodate a laptop but thin enough to fit on my bed; low enough to let me type without sitting upright but tall enough to allow me to shift restless legs underneath it.
Never mind the wheel or medical science, to me mankind's greatest inventions are the internet and the free-standing tea tray. Without them I'd scarcely exist.
I'd never call my illness a blessing: that's an insult to those who have it too. But it has taught me lessons I wouldn't otherwise have learned, like how to work quickly and effectively before my energy runs out and exhaustion runs in. It also means I have no chance to procrastinate, which other bloggers tell me is an invaluable gift.
As I go to sleep, I'm seized by two contradictory feelings: embarrassment at how little I've achieved and amazement I've achieved anything at all. I try not to focus on the former.
Disability blog entries I've enjoyed recently:
US film critic Roger Ebert's immensely moving follow-up to Chris Jones's Esquire profile of him. Roger Ebert is now unable to speak following facial surgery to treat cancer.
Deaf scriptwriter Charlie Swinbourne's much-needed piece on why cinemas are failing deaf people.
Visibleinvisibility's A to Z of chronic sex.
Scott Jordan-Harris writes for The Spectator and edits its arts blog. He is also Senior Editor of The Big Picture magazine, editor of the book World Film Locations: New York and a Huffington Post sports blogger.