People seem to think that being off work on a disability leave is like being on a vacation. “Must be nice to sleep in every day.” “You’re so lucky you don’t have to go in to work today.” “Boy, I wish I could stay home and take it easy.” What they don’t seem to get is that when you suffer from a disability, in my case dysthemia* (a form of clinical depression) with anxiety and severe depressive mood, as well as chronic headaches and migraines, you NEVER get a vacation from it.
Sure, I stay in bed a little later into the morning hours some days, but usually that’s because I’ve either spent half the night awake, tossing and turning, worrying about what I didn’t manage to accomplish the day before or about what I need to try and accomplish to make up for it the next day, and I’m not ‘sleeping in’, I’m laying there, probably red-puffy-eyed-from-crying and zombie-like, staring at the ceiling trying to talk myself into getting up and putting ‘normal’ clothes on for a change instead of staying in my pajamas all day. Then I’ll spend the next couple of hours avoiding the phone, emails, facebook, twitter or any other device that means I have to communicate with the outside world until I can get my emotions under control and feel more human again. When I’ve gotten a hold of myself, I’ll force myself to have a decent meal instead of crackers and orange juice, take my medications, read my encouragement quotes and try to feel positive about myself. If it’s a good day, I can usually get to this stage by noon. Then I can do a little housecleaning, maybe clean the birdcage, spend an hour or two on the laptop writing a bit, play a game, take a short walk outside in the back yard, as long as it’s not too bright and sunny (because then I’ll get a migraine from the bright light, even if I wear a big hat and dark glasses), play with the cats, or read for a while. I might get about four hours of productive and/or enjoyable activity out of the afternoon before the chronic headaches I live with start to ramp up and I have to retreat to my dark room with an ice pack on my head for a while. So, that about sums up my average ‘good’ day. Let’s not even start to talk about a ‘bad’ day.
Those ‘good’ days might only happen twice or three times out of every seven days. Sometimes less, sometimes more often. Now, I could possibly manage to go into the office and do some work for a couple of hours during any of these days, but I have no way of predicting how the stress of the workplace and interaction with people coming and going in that environment might affect me. I can say, with all honest and purposeful intent, that I would do my best to control my anxiety, I’d take my meds, I’d do deep breathing to stay calm, I’d visualize, and I’d try to be alright, but there’s no guarantee that I wouldn’t totally freak out and end up a hyperventilating mass of tears in the bathroom stall after the first half-hour. Then I’d have to be taken down to the walk-in ER for a shot because I’d have a full-blown killer migraine in no time flat from all the upset.
This is what people don’t seem to understand. I’m not on a vacation, I don’t always enjoy my days at home, most days I’d really like to be at work and feel like I’m part of a team again, to be able to interact with people and feel like a ‘human being’ again, to have control over my mind and my emotions, to be able to function in society once more. Until such time as I am able to work through my social phobias, my psychosomatic symptoms, my neuroses and my other associated problems, I’m not on a cakewalk. I have days of struggle, but they come with little mercies, a few hours in each day when a small thing can make me laugh or smile or giggle for a while, when something I see or hear or feel can bring me peace and serenity for a time.
I’ve gone through the whole spiel of explaining this because it might help some of you to understand where my ‘creativity’ comes from. It’s this crazy, mixed-up, manic life that breathes fire and ice inside me, that trickles through my bones like mercury and acid some days, and like milk and honey other days. It’s those high highs and low lows that create the raw edges on me. I write when my brain thinks of things; when a word or phrase creates an image in my mind and that image forms words that need to come out and be given life so I can shoo them from of my head where things get a bit crowded pretty fast. Some days the words and images are dark and tormented, and they bloom red and black. Some days they’re full of light and shine bright like laughter. Some days they’re soft and warm like a safe hiding place. They’re always changing.
So, if you find that you’re reading one of my poems one day and think, “Gee, that’s such a sweet, romantic poem!”, and then the next day you read another and are horrified and think I’ve turned into Wednesday Adams, don’t panic or think I’ve gone completely bonkers. It’s only that I must have been on a down swing on the roller coaster that is my crazy life. I’ll be okay, it goes back up again eventually. Just wait a day or two… or three.