Walking past open windows

“You keep skirting the darker subjects,” Ketchum told him. “You have a way of writing around the periphery of things.”
“I do?” Danny asked him.
“You do. You seem to be dodging the squeamish stuff,” Ketchum told him. “You’ve got to stick your nose in the worst of it, and imagine everything Danny.”

This excerpt from John Irving’s latest excellent novel, Last Night in Twisted River, reminded me of something Boekgirl said to me a while back about my blog. The posts I have written are about my discoveries, my insights and in some cases, victories, but not about the horrors of RA. Like Danny I have maneuvered around the periphery of my subject, while I am very much aware that, in my writing, there is a lot to harvest from the darkness of Rheumatoid Arthritis. But it is not easy to write about.

I had a painful Christmas this year. Literally. An RA-induced pain. On Christmas day I was not at my best, I was experiencing more pain and stiffness than usual, and I was very tired. It was hard to get going. We were spending the afternoon and evening with Boekgirl’s family, but ended up arriving there late afternoon, because I was moving at a slow pace. Being with the family was great, the food was good and everyone was in good spirits. Quite often when I flare up like I did during Christmas, my mind is closed off. I can’t think clearly and I find it almost impossible to communicate effectively, because it seems my brain is using most of its capacity to deal with the severe pain and fatigue of the flare. Fortunately this time, my mind was operating at an adequate level. Like last year, I was in charge of taking a picture of the whole family and that went well too. But after dinner I felt we had to leave soon, I felt the flare was ready rear its gruesome head and by the time we got back home, it did. The logical thing to do in this case, is to get to bed, but somehow I do not move. There is too much going on in my body to attempt to sleep and I nodded off after midnight on the couch. It was two in the morning by the time I went to bed.

Boxing day was my try-to-get-through-the-flare-day. All I could do was lie down, either on the couch, but most of the time in bed. I rated the pain an eight on a scale of one to ten, one being pain free and ten being hell. I felt it most in my feet, knees, fingers and wrists. Standing for more than five minutes was excruciating. Like the day before, my mind was functioning reasonably well and that made it a tad easier for Boekgirl; we were able to communicate. But this situation did mean she would have to do everything in the house that day. Bookkid had a more difficult day. He’d been bouncing of the walls the past week anyway and on this particular day I found it hard to be patient with him when he was not listening.

In a way I was happy with the pain. the pain was keeping my brain occupied. The pain stopped my brain from thinking of the impact of RA on my life. It stopped me from realizing that I could not take Bookkid to the train museum, the day was after all perfect for it. The pain kept away the thought that this disease would at times prevent me from doing fun stuff with my son and that I would have to tell him regularly that Daddy has RA and has a lot of pain and can’t play. It’s a good thing I was not thinking of any of these things that makes being a Dad with RA very tough. That would just get me down.

I am a big fan of John Irving. Like Dickens, he is a great storyteller. I admire the way he writes and love the characters he creates. My favorite Irving novel is The Hotel New Hampshire, and it is in this book that the Berry family repeatedly tell each other to keep passing the open windows. I interpret this as trying to stay on your chosen path and not being tempted to venture of it, which at times seems easier. Like Irving himself said in a recent interview, his books remind me to be grateful for the people I have around me, who love me and stick with me through the good and the RA.

Thank you for your time, take care of yourself and remember to keep passing the open windows.

© Ferhaan Kajee, December 2009

Published in: on December 27, 2009 at 11:00 am  Comments (5)  

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5 CommentsLeave a comment

  1. Thanks for sharing, I always enjoy reading your post on RA, you were very dead on with blog, it is so hard to think and be in pain at the same time, I, myself, feel like I am in a fog of pain when the RA flares up and sleep is the only real relief, I always look forward to a good nights sleep, especially when it has been a hard day with RA- thanks for sharing

  2. Hello, just ran across your blog, I also am a dad with RA. It is frustrating for me to be in a flare when there are family get togethers. I cannot give my full attention to the family because of the pain and the brain fog from being in a flare. I, like you, was in a flare over this Christmas but mine only rated about a 5 or 6, not an 8.

    Hope you are better now. We are supposed to get more snow and colder weather starting this evening. I’m so ready for winter to be over.

  3. You don’t stop to amaze me; how you’re coping with adversities and still keeping Book kid amused and trying to lead as normal a life as possible.
    Wishing you lots of strength with this last bout.


    A very proud Mum

  4. Thank you so much for your blog and for reminding me of a wonderful quote I adored when I first read it!

    I’m newly diagnosed with RA and reading others’ blogs has been immeasurably helpful. Hope you’re doing well in this new year.


  5. Sorry to hear that you were all flared up during the Christmas holidays. I know what you mean about not being able to think clearly during a flare because it seems like all your brain power is being used up in dealing with the pain. In times like this, I like to curl up with a heating pad and read a book to try to take my mind off the pain.

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