Creating a Haven at Home With My ‘Hemophiliac Handyman’

Over the past couple of weeks, my husband, Jared, and I have been fully occupied with home improvements.

We did a complete revamp of our bedroom, from repainting the walls to changing our old and deteriorating bed. We also replaced other furniture that was falling apart or no longer serving its purpose. Inevitably, I had to say goodbye to many goodies and curios in the name of decluttering.

Instead of hiring someone else to do the work, we decided we would make our room renovation a DIY project. The process was tiring and led to many sleepless nights, but seeing hints of progress made us feel productive and fulfilled.

Jared told me he was elated to have done so much manual labor. He even called himself the “Hemophiliac Handyman.” Having hemophilia makes Jared appreciate his own ability to work so much more, because moments of hard work are the exact opposite of the “boring” and “unproductive” times he is forced to stay in bed to recover from a bad bleed. He loves feeling useful and accomplishing tasks with his body. It makes him feel less broken.

In the process of our room revamp, Jared and I experienced various firsts. Although my dad is an engineer, and I often watched him help fix houses and other structures growing up, I had never done the work myself. I realize now that even a task as seemingly simple as painting a room takes a great deal of effort and commitment. However, working with people whose company you actually enjoy (and playing some ’90s dance music in the background) makes it so much fun!

Painting is a family affair. (Photo by Alliah Czarielle)

I’ve also learned that the designing process involves trial and error. Our room currently doesn’t look identical to how we imagined it would look. We had to change out certain items, some newly bought, because they didn’t quite work with their attachments or the general feel of the room. These mistakes helped us eventually make better choices.

Lesson learned: It’s good to keep an open mind and be OK with changes along the way. The same principle applies to life, especially when it is unpredictable due to chronic illness. So far, I have learned that having a vision for one’s life is a good thing, but embracing changes and learning to deal with setbacks is the real key to thriving.

Working on each other’s side of the wall. (Photo by Alliah Czarielle)

Our bedroom is still a work in progress. We are in the process of acquiring new furniture (one piece at a time) and removing the clutter we’ve managed to accumulate over the years. I admit that I’m overwhelmed by how much stuff I have that I never really get to use. I also feel bad about having to stash away many things I love, only to forget that I own them because I can’t see them right away.

So, I am making a sacrifice and spending some of our hard-earned cash so I can enjoy my blessings as much as I should, instead of constantly forgetting about them and getting stuck in a cycle of depression.

So far, I like the outcome of our little project. Our space feels much happier now with our brighter color scheme. I also feel a lot more inspired to work and become even more successful financially so we can afford to live a decent life, even with the excess costs of being chronically ill.

The “Yay, I painted the room!” dance. (Photo by Alliah Czarielle)

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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.