Laughing At My Nightmare

Laughing at My Nightmare is a 2014 memoir by Shane Burcaw, a young man whose eponymous Tumblr about living with spinal muscular atrophy has made him a relatively famous presence on the internet. Written with a mix of snarky commentary, self-deprecating humor, realistic details about his disability, and the swear-filled teenage swagger, the book is Burcaw’s effort to demonstrate how much he is just like every other eighteen-year old and how his disability shouldn’t affect how the world perceives him.

Burcaw was born with spinal muscular atrophy, a progressive condition caused by the body’s inability to produce an enzyme responsible for creating and maintaining muscle tissue. This means that on top of having a few physical abnormalities, Shane’s body is gradually getting weaker and his muscles are less and less able to function properly. His disease doesn’t impact his mental capabilities, however, and Burcaw prides himself on his above-average intelligence and his ability to process his disability in an upbeat and non-defeatist way.

The memoir features some extremely candid details about what Burcaw’s life is like on a day to day basis. He opens the book with a scene of his brother Andrew helping him in the bathroom – which gives Burcaw a great view of the hair on his brother’s ankles. More details like this ground this book. Burcaw describes screaming out football color commentary instead of profanity in the doctor’s office in order to handle painful monthly injections. He shows his reader the terror he feels whenever his head loses balance, putting his ability to breathe in danger. At any time, a triumphant moment can turn into a potentially life threatening one – like the time Burcaw remembers being about to go on stage to speak to an auditorium of fans, and worrying that in their excitement, they would rush the stage, jostle his wheelchair, and possibly break his neck. But despite the nature of these revelations, Burcaw portrays his daily struggles with humor – the reader feels the young man’s courage in trying to do as much as possible in spite of the danger and hardship.



At the heart of the memoir is Burcaw’s desperate wish to be perceived as “normal” – as a teenager just like all other teenagers. He is focused on appearing as cool as possible, and highlights his mischievous sense of fun, his friendships, the ways in which he’s been able to participate in sports, his active and popular social media presence through his Laughing at My Nightmare Tumblr, and his romantic prospects.

But many readers point out that in this quest to be seen as typical and not out of the ordinary, Burcaw ends up distancing himself from other disabled teens to such a degree that he runs the risk of alienating his readers. For Burcaw, his sense of humor about himself really sets him apart from other students with disabilities, whom he often portrays judgmentally and in stereotypical ways. The book includes sections that imply that people with mental, emotional, or social disabilities are deeply inferior to him and simply not worth his time. Burcaw dismisses them as tantrum-prone, drooling, and disgusting, which is a surprise coming from someone whose advocacy focuses on tolerance and a rejection of the kind of marginalization that he himself has been a victim of. For example, a section talking about Burcaw’s need to take the adapted PE class for special needs students because of his wheelchair, claims that the mentally disabled people he saw there “consistently smelled like they had atomic bowel movements simmering in their pants, and all they ever talked about was Disney movies.” Similarly, a passage describing the other riders of a special needs bus mocks their symptomatic behaviors.

It’s clear from Burcaw’s descriptions that he deeply relies on his family for most of his daily functioning (he can’t walk, hold his head up, chew, or talk as he has lost control of the muscles that control these actions) – and that their support and encouragement has helped him tremendously with the way that he has adapted to his disability psychologically. But this memoir tends to leave his parents and brother most out, with only a few references to them peppered in here and there.



Instead, what is most memorable about Burcaw’s story is his advice for how he approaches life. In order to deal with problems that arise, he uses what he calls the “will it matter in ten years” rule. When thinking about breaking up a relationship, or handling a broken bone, the important question is – will this situation matter in ten years’ time? Since most problems won’t, there’s no reason to worry about them any more than strictly necessary. For those that will matter in ten years, there is a follow-up question: can he do anything about the problem? For things like his muscles slowly losing function, or the death of a loved one, the answer is clearly no – so again, it’s better to just let worries about these problems go. This way, the only things he focuses on and works to overcome are real problems with realistically achievable solutions.

The memoir ends on a romantic note, as Burcaw describes meeting and starting a relationship with his girlfriend. He doesn’t shy away from discussions of sexuality and disability, a topic that rarely gets discussed in detail. At the same time, he mentions that part of growing close to his girlfriend has included the need to teach her how to take physical care of him while they are together – for example, before they could go out on dates, she needed to know how to prop up his head if he lost the ability to hold it up. As Burcaw puts it, although they can’t do every possible thing when they go out and mountain climbing isn’t really on the menu, he loves being able to make her laugh, and loves that she is a girl who is willing to “make it work.”