The Coalition for Hemophilia B

View Original

Living with Hemophilia B: Anna-Marie’s Story of Resilience and Learning

By: Shelly Fisher

My head is filled with useless information,” Anna-Marie said with a smile. Attributing her self-assessment to a love of puzzles, trivia, history, social science, and an avid love of books.

Sharing that her penchant for solving puzzles didn't stop with table-top jigsaws, Anna-Marie confided that she works daily on word puzzles like cryptograms. Based on her role as “the organizer” in her home where she is responsible for stocking the fridge and “making things fit,” it’s no surprise that the well-known, old-school video game, Tetris, takes up space on her phone.

Currently reading a fantasy novel, The Night Angel by Brent Leaks, Anna-Marie recalled two all-time favorites- Room by Emma Donahue and Gazebo by Emily Grayson. Why did she select those titles? “They're both fiction, but the way they’re both written…it makes you feel as if everything is happening to you.”

Her love of history started in the 5th grade, and she shared that she has a particular interest in World War II and the depression era. “With any great conflict, there’s always going to be things that are interesting, but with this era, you see people acting out of heroism and depravity.” Anna-Marie felt that her strongest knowledge base was in the social sciences arena, and more specifically the area of anthropology. She also shared that she is intrigued by the Roman and Greek myths, in addition to documentaries detailing evidence of the cities of Troy and Atlantis.

In her free time, the puzzle enthusiast/trivia master can be found window-shopping, walking through antique stores, and thrifting with family and friends. One of her favorite purchases was an old sewing machine that fit into its own table. When asked how her family and friends might describe her, she offered, “someone who is blunt, honest, a peacemaker, great speller, and their personal on-call, tech support.”

Though she had logged on for several virtual symposiums previously, it was when Anna-Marie attended the Coalition for Hemophilia B’s 2021 Symposium in Orlando, Florida, that she and her family were impacted the most. “There was a seminar on mental health, and how everyone processes things differently. When you get upset, you’re really just thinking differently than others. That helped me a lot.”

When asked how the CHB had specifically contributed to her journey with hemophilia B and her family’s endeavor to support her, she commented, “It’s opened doors that weren’t there before with learning and community but also with the assistance they provide so we can attend events, and meeting people you can talk to throughout the year. It made us more knowledgeable and made us feel like we can address it in better ways.”

Anna-Marie has learned a lot about herself since her diagnosis. “I'm not a superhuman. I have limitations. I try to do a lot, so it reminds me that I can’t do everything. I’m not a she-hulk. I gotta think about what I can and can’t do.”

When asked to share words that she lives by, Anna-Marie expressed her love for the Book of Proverbs. She smiled and said, “I always go back to 1 Corinthians 13:4. Love is patient, love is kind. It does not envy, it does not boast, it is not proud.” She asserted further, “I always try to better myself, whether it’s patience, or learning, or improvement.”