The Hemophilia Shadow Monster and My ‘In-between Bucket List’

When living with hemophilia, one must take advantage of the good days

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by Alliah Czarielle |

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Hemophilia is a lifelong condition, both for my husband, Jared, and me. He’s had hemophilia B since he was born, and until a cure is found, it’s here to stay. While I don’t have hemophilia, we both must live with it.

I imagine hemophilia to be like a childhood shadow monster looming over our lives, trying to trick us into playing games. It grabs Jared with invisible claws, pulling him back and limiting his movements. But it’s not strong enough to hold him back completely. As a result, he still has wiggle room to be.

He can still let out steam with specific activities, such as swimming, badminton, gym workouts, and walking. He also has complete freedom to pursue creative ventures that require little physical effort, such as voice acting, writing, and similar activities in his line of work.

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The shadow monster of hemophilia also likes to play alongside me. Though it doesn’t hold me back the same way it does my husband, it walks by my side and interlocks its fingers with mine. On some days, its grip is light and I don’t notice it at all.

Perhaps Jared has just had an infusion of factor IX and is likely to stay bleed-free for a while. Or maybe he’s had a lucky month without debilitating bleeds. But on other days, hemophilia holds us both hostage to its whims, keeping Jared from his responsibilities and adding his convalescent care to my own.

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The duty of love binds me to care for my spouse for as long as I’m able. Yet the task can be draining and isolating at times. And the shadow monster doesn’t offer any help. It’s simply not in its nature — all it wants to do is play its games.

So I make the best of the good days, those moments in between bleeding episodes. I dive into the mundane, filling my days with tasks and finding fulfillment in completing each one — going to the mall, getting groceries, finishing work at all three of my jobs. I delight in making lengthy to-do lists and checking off every item Jared and I can accomplish together. It’s as if I have a bucket list for every “in-between” period.

Last week, Jared and I had a number of accomplishments: a week’s worth of preparation for a trip, surviving two 10-hour drives, attending a friend’s wedding, going to the beach, and eating lobster. Some would consider this to be a single activity, just one item on the list: Trip to a Distant Province. But I want to be reminded that I did all of these things, because sometimes the shadow monster chooses to stop us midway through our tasks — like that time it chose to cut a lovely vacation short with a freak pool accident that turned into a bloody disaster and a missing tooth.

Inevitably, the shadow monster will come back into our lives to play games with us. And we’ll have no choice but to play along. Until a cure allows us to bid it goodbye, I’ll hold on to the good times and live for my “in-between bucket list.”

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, and are intended to spark discussion about issues pertaining to hemophilia.


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