Living with hemophilia B and von Willebrand disease requires an escape

Scrabble, the classic word game that has enthralled generations, is a captivating blend of strategy, vocabulary, and skill. I began playing competitively in 2010. At best, I am a mediocre player, but I love the game and am grateful for my connection to the Scrabble community.

For me, Scrabble has been a lifeline during challenging times, especially while recuperating from medical procedures related to my hemophilia B and von Willebrand disease. In those moments, engaging in online Scrabble matches proved to be the perfect distraction, offering a mental escape from my pain.

In 2019, I faced an incredibly demanding medical journey. I underwent a hysterectomy and hernia repair, but my recovery was marred by a series of complications. I spent extensive periods in the hospital. At home, I grappled with drainage tubes and a vacuum-assisted closure of a wound to manage persistent bleeding.

Throughout the year, my physical capabilities were severely restricted, and mentally, I struggled profoundly. The burden of enduring one complication after another took a toll on my mental health, leading to a deep sense of depression and emotional distress.

Amid the chaos of my medical challenges, online Scrabble became my refuge. Studying word lists provided a welcome distraction from the turmoil of my situation. Scrabble became the beacon of light in my day, offering a sense of purpose and anticipation that helped me navigate the difficult period of my life.

Competitive Scrabble

The world of competitive Scrabble is a fascinating subculture where top players commit vast lists of words to memory, ranging from two- and three-letter words to those obscure “Q” words without a “U,” or five-letter “Z” words. The actual definitions of these words do not matter. The real thrill lies in crafting high-scoring plays, strategically capitalizing on premium squares on the board.

Top players usually are not linguists, but rather mathematicians or computer programmers. Success requires not only anagram prowess but also the ability to think several moves ahead, akin to the tactics employed in chess. It’s a duel where players continually push the boundaries of their opponent. Indeed “phonies,” or made-up words, are an important part of the game.

This is not living room Scrabble

Once you have memorized a few word lists, casual players will no longer play with you. In order to continue on your Scrabble journey, you need to seek out a competitive club or play in tournaments. The top players, of which I am not, are wickedly smart. They can look at a rack and a board and immediately see possibilities I would never see.

The roots of Scrabble in my family run deep. My parents used to play in college. In fact, I have their Scrabble board from the 1960s. My cousin and uncle started playing competitively years before me. I would play with them, and gradually, my game improved. My uncle talked me into trying a club and then a tournament, and I was hooked.

COVID-19 almost ruined Scrabble. A game played face to face with tiles touched by many people was a germy proposition, even long before COVID-19. I remember a tournament in which I sat across from a player who coughed in my face the entire time. I suggested to my uncle that he wash his hands after each game. He rolled his eyes, but later, he came down with whooping cough, which I am certain he caught at the tournament.

My people

Scrabble aficionados possess a distinct charm; they’re frequently characterized as nerdy and socially awkward, yet beneath their quirks lies an incredible warmth, generosity, and inclusivity. Similarly, many individuals with bleeding disorders, particularly those of my generation, share this social awkwardness. Most of us experienced a level of isolation due to the stigma associated with hemophilia in the 1980s.

Despite our unique challenges, the Scrabble community, much like those of us with bleeding disorders, demonstrates the power of acceptance and belonging, fostering connections that go beyond a Scrabble board or bleeding disorder diagnosis.