Life's Too Short

Content Warning: This section of the guide includes discussion of illness and death.

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive and terminal neurodegenerative disorder that affects the motor neurons, or nerve cells in the brain and spinal cord, which are responsible for voluntary muscle movement. As these neurons deteriorate and die, communication between the brain and muscles breaks down, resulting in gradual muscle weakness, loss of mobility, and complete paralysis. Despite many patients retaining intact cognitive functions, ALS ultimately robs individuals of the ability to speak, eat, move, and breathe independently. In Life’s Too Short, Vanessa says, “ALS took this from me, like it had taken so many other things. It was more than just a thief of life. It stole hope. Dignity. Dreams. And it would take until there was nothing left” (97-98).

Doctors and scientists don’t fully understand the causes of ALS. Approximately 90-95% of cases are sporadic, meaning they occur without a known family history or genetic mutation. The remaining 5-10% are familial ALS, caused by inherited genetic mutations. Environmental and lifestyle factors, including exposure to toxins, military service, and head trauma, have also been investigated as potential risk contributors, though conclusive links remain elusive. The onset of ALS is typically subtle. Early symptoms may include muscle twitching, cramping, slurred speech, and difficulty with simple movements, such as buttoning a shirt or climbing stairs. As the disease progresses, patients experience increasing levels of disability. Respiratory failure is the most common cause of death in advanced ALS, usually within two to five years of symptom onset (“Understanding ALS.” ALS Association).

There is currently no cure for ALS. However, medications such as riluzole and edaravone may slightly slow the progression. Supportive therapies, including physical therapy, speech therapy, and respiratory care, aim to maintain quality of life. ALS is a disease that not only impacts the patient physically but also emotionally and socially, requiring an understanding and compassionate support network. Public awareness, ongoing research, and patient advocacy remain critical in the fight against this life-altering condition. The Ice Bucket Challenge was a viral social media campaign that began in the summer of 2014 to raise awareness and funds for Lou Gehrig’s disease. The challenge involved people dumping a bucket of ice water over their heads, filming it, and posting the video online. Participants would then nominate others to do the same within 24 hours or donate to ALS research. The campaign spread rapidly, with participation from celebrities, athletes, politicians, and millions of people worldwide. Though it started informally, the challenge became associated with the ALS Association, raising over $220 million globally for ALS-related charities (Welch, Ashley. “One year later, what the ice bucket challenge has done for ALS research.” CBS News, 20 Aug. 2015). Importantly, donations funded significant breakthroughs in ALS research, including discovering a new gene associated with the disease, NEK1 (“Breaking Research News: Largest Ever Study of Inherited ALS Identifies New ALS Gene NEK1.” ALS Association, 22 July 2016).