Living with hemophilia means adapting and accepting

A malfunctioning laptop leads to creativity and a life lesson

Alliah Czarielle avatar

by Alliah Czarielle |

Share this article:

Share article via email
main graphic for the column

The new year ushered in an unexpected surprise: the near demise of my six-year-old laptop.

I lifted the rose gold aluminum top expecting business as usual only to find a huge black line running from the top of my screen to the bottom. To my horror, I also discovered the keyboard was no longer functioning.

Because of how old it is, I knew this was bound to happen eventually. The timing was simply off. With loans to pay and other major expenses, I wasn’t prepared to buy a new one just yet. Repairing it didn’t seem practical, either, considering how old it is. Creativity was my only choice to adapt to this less-than-ideal situation.

Realizing that I owned a mechanical keyboard, I connected it to my laptop. I also bought an external monitor to help with the screen issue. This had a small upside: I could implement a multiscreen setup!

Although the new setup worked, it also rendered my once-portable device practically stationary — a compromise I had to make.

Recommended Reading
An illustration of a blood vessel.

Similar quality-of-life problems reported by hem A and B patients

The downside

While the adaptation solved some issues, it brought its own set of problems. Because my new setup lacked portability, I ended up missing out on opportunities like a workshop that required a laptop. How disappointing!

This whole struggle made me think of how my husband, Jared, adapts to life with hemophilia and epilepsy.

Jared relies on factor products to treat bleeds caused by hemophilia B. He adapts when certain body parts don’t function properly due to bleeds, making use of household items like computer chairs to be able to move. It’s not the best setup, but it works just fine as a temporary fix.

Additionally, at times rest is his only option. This is often the case with severe bleeding episodes. Besides having to endure physical pain, he must patiently wait to resume his normal routine. Since Jared lives a rather active life, long periods of idle time tend to mess with his mental health.

Because he was born with hemophilia, he’s accustomed to having to adapt on a regular basis. But he occasionally finds the process physically and emotionally draining.

Jared’s acceptance of his limitations coexists with moments of frustration, especially when faced with seizures that limit his independence. He acknowledges these challenges, but the adaptation process sometimes feels like a Band-Aid rather than a cure.

Radical acceptance is the best solution

During these moments, radical acceptance becomes the key to moving forward. Author Karyn Hall defines radical acceptance as “accepting life on life’s terms and not resisting what you cannot or choose not to change.” While Jared acknowledges his difficulties, he understands that lingering in a state of depression won’t improve his situation. He focuses on finding a way to move forward. Accepting and working around our limitations is often the only path to progress.

At the end of the day, radical acceptance enables us to face certain realities, adapt to limitations, and continue moving forward, even if it means missing out or moving more slowly than usual.

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.


Leave a comment

Fill in the required fields to post. Your email address will not be published.