I once spent an entire summer reading Emily Dickinson’s work and analyzing it, from the literal meaning of her words to the historical context of her work and the constraints under which she wrote each line. At the end of that summer, I was positive about one thing when it came to Emily: She was a consummate worrier. In this, I felt a special kinship with her.
In my current readings on chronic worry, I again feel the spirit of Emily. The term certainly describes her every documented thought. In the world of hemophilia, the word chronic comes up a lot, such as when describing the eternal nature of the condition and the associated pain. We don’t attach — at least openly — the words chronic and worry. Yet, worry is part of the triad of chronic that is our community condition.
We often hear, during a visit with the doctor or a conference session, that journaling is a beneficial approach to improving our coping ability and letting go of what ails us mentally. Every time I hear this suggestion, I nearly vomit. I know the idea, coming from a trained therapist or a conscientious volunteer, is well-meant. But the lack of context (how exactly does journaling work on my brain?) and direction (how does one start a journal? Where is the beginning? Do I even need one?) have the same stifling effect as classroom-mandated journals.
This suggestion often comes with the instructions that we should tackle the tough stuff and write what we know. Then — bonus! — we can all share our thoughts with the group, if we’re comfortable.
As a writer and a writing teacher, I understand how challenging the writing process can be, and how working through that difficulty often results in some of the most beautiful, insightful, and meaningful pen-to-paper moments. I also know that introducing the idea of journaling in the way I’ve described results in just one more anxious and worry-filled moment for me. Based on the furrowed brows I’ve seen, I know I’m not alone.
I value the science behind conquering anxiety through writing, but it’s essential to share that science. I value the suggestion of journaling, but it’s necessary to break down the process into easily executed steps. While it is important to explore our life experiences so that we better understand how to frame our stories, it is equally vital to allow moments of invention, and to be able to put intervention on the back burner until we’re ready.
In our hemophilia community, we share a great many conversations based on our shared experiences and, sadly, traumas. They’re often the source of some of our best ideas for our own family’s care. But our journal doesn’t have to be based solely on our experiences with bleeding; in my journal, I write about butter, coffee, mangoes, and an occasional travel adventure.
Why? Because a journal is an escape from reality for me. This is the place where I find the luxury to try new ideas and not think about how many calls I’ve made to our new insurance company. My journal is how I go to another place to free up my working memory and allow it to unwind from daily pressures. My journal is a place to rebuild fatigued, overwrought brain cells.
If you were to ask me how to begin a journal, I would offer this advice: Start small. Take a walk tomorrow. Find a crack in the sidewalk and study it, maybe even take a photo of it. Find a notebook and a pen that feels just right in your hand. Write a few notes, perhaps make a sketch. Be sure to note the coloring of the asphalt, the width of the crack, the jaggedness of it; maybe it looks like a road map or a stream that leads to a wide river near your home. You don’t need to write a page-long rumination on the crack; a few sentences will do.
The next day, walk a different direction on your sidewalk and find another crack. Your brain will relish the new course of your walk. When you see the new crack, write and sketch again. Today, be sure to look at the sky. Note whether the day is cloudy or clear, windy or crisp. You could even name your sidewalk cracks if you want to; often, personalizing that which doesn’t seem to have a name makes it nearer and dearer, and therefore more understandable.
Keep this up for a week, and you will have documented not only your walks but also your surroundings on a variety of days. You’re writing your story in your place in your time. By breaking down the task of journaling into simple steps, you can begin your journey. No high dive needed, some chronic worry abated — and no sharing required.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.
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