Living with Muscular Dystrophy: Blake's World

Summary

The video script narrates the life of an individual with Spine muscle atrophy Type II, detailing their experiences with disability, dependence on others, and the profound impact on their daily life. It explores themes of friendship, family, and personal growth, highlighting the subject's journey through music, writing, and faith. Despite physical limitations, the individual finds independence in creative expression and maintains a positive outlook, challenging societal perceptions of disability.

Takeaways

• 😊 The speaker has Spine Muscle Atrophy Type II, a genetic disorder that prevents muscle development.
• 🦽 They've never been able to walk and now rely on others for most tasks, but they've accepted this reality as their life.
• 🎵 Music plays a significant role in their life, and they started writing lyrics in third grade, using music to organize the chaos of their thoughts.
• 🤝 Despite their condition, they have deep, meaningful friendships and respect the patience and care their friends show.
• 🧑‍🦽 Finding a girlfriend is important to them, but they need someone willing to help with their physical needs.
• 👨‍👩‍👧‍👦 They admire their family, especially their brother, who shares the same condition, and their mother, whom they describe as amazing.
• 🎓 Independence is important to them in certain aspects of life, such as writing, but they acknowledge they need help for daily physical tasks.
• 💪 Despite their disability, they challenge the conventional definition of 'disability' by leading a fulfilling life, attending university, and having a social life.
• 🙏 Faith plays an important role, and they credit finding a community through church with making them feel accepted and loved.
• ☠️ They are not afraid of death, having exceeded their life expectancy by many years, and are at peace with the idea of dying.

Q & A

What is the narrator's medical condition?

The narrator has Spine muscle atrophy Type II, a genetic disorder where the muscles don't develop, leaving them with the same muscles as when they were born.

How does the narrator's condition affect their daily life?

The narrator is unable to walk and requires assistance with daily activities such as making breakfast. They are dependent on others for most tasks due to their weakened muscles.

What role does music play in the narrator's life?

Music is a significant part of the narrator's life. They started writing lyrics in third grade and view music as a universal language that organizes the chaos of thoughts into lyrics.

What challenges does the narrator face in forming friendships?

The narrator believes it takes more to be their friend due to their extensive needs and the patience required to deal with their situation. They have a deep respect for friends who can handle their circumstances.

How does the narrator's disability influence their approach to relationships?

The narrator has a high priority for having a girlfriend but recognizes the need for a partner willing to assist them with their disability, making it a condition for dating.

What is the significance of the narrator's family in their life?

The narrator's family, including his brother Ryan who shares the same disability, his mother Julie, and his siblings, plays a crucial role in his life, providing support and being a source of strength.

How does the narrator define independence despite their disability?

The narrator considers themselves independent in ways that matter to them, such as through writing and making decisions, which they believe is the closest thing to freedom.

What is the narrator's perspective on disability based on the dictionary definition?

The narrator disagrees with the dictionary definition of disability as a lack of power or ability, arguing that they maintain a social, religious, and productive life despite their condition.

How does the narrator cope with the emotional challenges of their condition?

The narrator sometimes questions God and expresses frustration but finds solace in their faith, which provides a clearer perspective on life and helps them accept their situation.

What is the narrator's attitude towards death?

The narrator is not scared of death, acknowledging that they have exceeded their expected lifespan and are at peace with the possibility of dying, while also cherishing life.

How does the narrator's experience with disability influence their creative work?

The narrator's disability influences their creative work by restricting them to writing lyrics and music, as they cannot sing or play instruments, but they still express themselves through these mediums.