I have pondered this very question often and for long periods of time these last couple of years. How do you fulfill a dream when your body can’t do the thing you want or need it to do for that dream to come true?
How do you become a writer when fatigue often keeps you from actual writing? How do you become a writer when brain fog keeps you from thinking about plot ideas? How do you become a writer when headaches keep you from editing? In short: how could I be a writer when so often daily symptoms keep me from writing?
The answer has come to me after lots of stumbling and falling and eventually getting back up again. One time not long ago I even gave up on writing altogether: so much illness involving my eyes and head made my dream of becoming a writer feel silly and unrealistic.
But here I am, writing, on my own blog!
So how did I get here and how I do combine my illness with writing?
Honestly? There is no easy answer. When you deal with symptoms on a daily basis yet their severity changes and fluctuates, there is only one thing you can be sure of and that is that there is nothing you can be sure of when it comes to chronic illness.
So embracing that uncertainty was a big part of the answer for me. But it was no easy feat.
For years, I tried to regulate my illness. Make it keep to a schedule that fitted me; not the other way around. Needless to say: this never worked. Illness would rear its ugly head again and again and each time leave me hopeless and desperate for a different life; for my dream life.
But as that life drifted further and further away from me, I was given no choice but to face my chronic illness head on and accept that it leads me; not in fact the other way around.
That, though learning it the hard way, proved to be my salvation.
I had to learn to accept over time, one way or another, that, whether I like it or not, illness plays a big part in my life. Perhaps even the biggest. It means that I have to adjust everything about my life around it.
Now to the healthy mind and body this might sound excessive, and I understand that. But it is the only way to live when you have a chronic illness: you have to let it play it’s part and work with it; not against it. That’s when bad things happen – trust me: I know..
So since having fully accepted my chronic illness (it took a little longer than I make it sound here..), I have finally found a balance that works for both my body and for my mind. For instance, I check in with my body and mind every day and see what it is able to cope with. Unfortunately chronic illness is unpredictable and you can’t assume that a good day will lead to another good one or that a bad day will mean another bad one is around the corner. It is a daily conversation that has become paramount for me and my health, and for the first time in my life, I actually listen. So based on this conversation I decide what I can do each day.
Some days that means I can write for 2-3 hours a day, which is my maximum.
But other days it means it can’t write at all because the headaches, physical pain or fatigue are too severe. On the days in between where I am up for some activity but not too much I type up part of a story (I write first versions by hand: a compromise I had to make as I’m not always able to sit behind a pc or laptop) or freewrite a little in my notebook, brainstorm about a new story or just write up new ideas: anything to at least be creative. It means that I am not a writer in the conventional sense: I don’t write every day, as I physically can’t. But I no longer believe this makes me less of a writer. I have found a rhythm that suits me well and that I currently feel good about because it lets me actually be a writer.
This lifestyle does mean though that updates and new stories don’t get written and published here as often or as regularly as I always hope. Sometimes weeks go by when my body just isn’t up for any type of creative activity. That is something I have had to (relunctantly!) accept and I can only hope that you, my reader, do and understand too. But at least I write again! Whenever I can. And isn’t that enough to see myself as a writer? I now finally believe that it is!
So how am I a writer with a chronic illness? By accepting that I am one. It’s the easiest answer, but the hardest conclusion I have ever had to come to.