Laughing at My Nightmare

PUBLISHERS WEEKLY SEP 1, 2014

In this no-holds-barred autobiography, 21-year-old Burcaw sheds light on what it has been like to grow up with spinal muscular atrophy (SMA), a deadly disease that has left him confined to a wheelchair and dependent on others "for pretty much every aspect of staying alive," due to his inability to develop and maintain muscles. Burcaw tells all including the difficulties of getting dressed, turning over at night, or relieving himself in a frank, funny, and sometimes profane manner ("It probably looks like we are filming a multi-fetish porno involving severely disabled people and urination"). His honesty, tempered by mordant humor and a defiant acceptance, is refreshing, even as he thumbs his nose at the disease that is slowly stripping him of the basics. Burcaw has blogged about his experiences and launched a nonprofit organization to spread his message of remaining "positive in the face of adversity through the use of humor," though the hard realities of the disease (the need for feeding tubes, the risk of infections) are never far from view. It's engaging, inspirational, and eye-opening. Ages 14 up.