{"id":901,"date":"2014-10-03T09:00:01","date_gmt":"2014-10-03T14:00:01","guid":{"rendered":"http:\/\/disabilityinkidlit.wordpress.com\/?p=901"},"modified":"2021-08-22T14:32:49","modified_gmt":"2021-08-22T14:32:49","slug":"elise-phalen-reviews-100-sideways-miles","status":"publish","type":"post","link":"https:\/\/disabilityinkidlit.com\/test\/2014\/10\/03\/elise-phalen-reviews-100-sideways-miles\/","title":{"rendered":"Review: 100 Sideways Miles<\/i> by Andrew Smith"},"content":{"rendered":"

The first time I ever saw a character with epilepsy in literature, she eventually turned evil, cut off someone\u2019s head in an ancient magic ritual, and then died in a burning castle.<\/p>\n

I was diagnosed with epilepsy at eleven and have had grand mal seizures on and off over the past 11 years.\u00a0 Looking back on that first reading, I am troubled that she met such an unfortunate end.\u00a0 But at the time I was ecstatic.\u00a0 It was life changing.\u00a0 My experiences existed in the fictional world.\u00a0 I was worth thinking about and my problems were worth writing about.\u00a0 The next time I saw a character with epilepsy in young adult literature, it was the narrator of 100 Sideways Miles<\/em>, which I read almost seven years later.<\/p>\n

\"Cover<\/a><\/center><\/div>In between these two readings, I mostly saw seizures on TV shows where the first aid was always wrong (I\u2019m looking at you, Teen Wolf and Orphan Black).\u00a0 There are also the handfuls of upsetting moments when a character would dance badly and the other characters would laugh and compare their lack of rhythm to having a seizure.\u00a0 I would cringe as it hit me viscerally, wishing that I could scratch the words off the page and out of my memory.<\/p>\n

Andrew Smith\u2019s 100 Sideways Miles<\/a><\/em> is essentially a bildungsroman, a coming of age story, about a boy, Finn, who goes on a road trip and comes to understand that he is still \u201ctoo young and too stupid\u201d and that the journey of coming of age is never really complete.\u00a0 Finn\u2019s journey is also one towards coming to terms with his body and his autonomy, as connected to his epilepsy.<\/p>\n

Epilepsy is a very complicated condition that no one experiences in exactly the same way, so Smith gets some leeway in how he portrays Finn\u2019s seizures. \u00a0But it was respectful and well researched in a way that I had never seen before.\u00a0 Smith did not ignore the importance of first aid or the realities people with epilepsy face on a regular basis.\u00a0 Finn experiences non-convulsive partial seizures and he faces them as something scary but somehow beautiful:<\/p>\n

I am just standing there, and first I smell something sweet \u2014 like flowers or maple syrup.\u00a0 Then I realize that I don\u2019t know the names for anything I am looking at \u2026 Sounds, colors, textures, all mash together in an enormous symphonic assault on my senses as I shrink down, smaller and smaller. I am not hot, cold, dizzy, or uncomfortable \u2014 because all of those things are words<\/em>, which by that point the seizure have all floated away \u2026 It is all so beautiful.<\/p><\/blockquote>\n

Finn\u2019s \u201catoms drift apart\u201d and he is at the whim of the new world his seizure has created.\u00a0 For me, who has seizures primarily while I sleep, this haunted me in how much it resembled a reversed version of how I regain consciousness.<\/p>\n

Smith does a good job for the most part of balancing a respectful portrayal of a complicated condition and accurately portraying the realities that accompany it.\u00a0 Smith is respectful, but Finn is angry.\u00a0 His anger manifests as outbursts following his episodes, and is generally accompanied by the panging guilt of lashing out at the people who care about you over something that neither of you can control.<\/p>\n

In the plot, Finn\u2019s seizures serve as a physical manifestation of his fear that he is stuck in the book his father wrote which contains a character clearly based on him.\u00a0 He feels out of control of his life and his destiny and attempts to reconcile his lack of bodily autonomy by taking control of the way he perceives the world, such as measuring in minutes instead of miles.\u00a0 Connecting disability to metaphor is difficult terrain to tread, but Smith does his best.\u00a0 Finn\u2019s epilepsy is portrayed in its own right as an important part of his character and I felt it came across as a piece of what makes him who he is rather than simply a plot device.<\/p>\n

The question of fate and autonomy is a prominent theme of 100 Sideways Miles<\/em>.\u00a0 These issues are a huge part of my daily life: \u201cDo I just have a headache or did I have a seizure in my sleep last night?\u201d and waiting a full day after a seizure for my full motor capacity to return. It was nice to see that Smith didn\u2019t shy away from the things that are real and scary about epilepsy and how it dictates your relationship with your body.<\/p>\n

Treating a disability with thoughtfulness and respect goes beyond the plot and the metaphorical implications.\u00a0 It\u2019s also the little things that matter and make it feel real, especially to those of us who actually live with that disability.\u00a0 Smith does not ignore that the frequency of Finn\u2019s seizures have precluded him from learning how to drive.\u00a0 He portrays the desire to avoid the subject with strangers alongside the need for people to know how to deal with it in case he has an episode around them. I enjoyed the way that Finn dealt with these issues with equal parts awkwardness and bravery.<\/p>\n

The book\u2019s only truly distasteful moment for me came in the scene when his love interest Julia found him on his front porch after a particularly bad episode and later made a joke about possibly having taken a picture of his naked, unconscious body.\u00a0 With trends of this sort of things actually happening via social media lately, it was a vicious joke that I wish had not been included.<\/p>\n

Beyond that disturbing scene, Smith left some key things out of his portrayal of the epilepsy experience. \u00a0The most glaring thing missing was any mention of long-term medical treatment.\u00a0 Finn has no regular neurologist and doesn\u2019t take any medication. I kept waiting for him to take his medicine or complain about the tedium of medical treatment, but it never came.\u00a0 My other disappointment was not Smith\u2019s fault, but the choice on the part of his publisher not to include Finn\u2019s epilepsy in the blurb on the back cover.\u00a0 How will my fellow epilepsy pals know that Finn is there if no one is telling them?\u00a0 This oversight reeks of ableism and shame when they should be proud of their epileptic boy and his grand adventure.<\/p>\n

All in all, 100 Sideways Miles<\/em> is not a perfect portrayal of what it means to have epilepsy.\u00a0 But it is respectful and spoke to me on unexpected levels.\u00a0 The story itself is a ton of fun and I enjoyed Finn and all his quirks. \u00a0100 Sideways Miles<\/em> did its best and opened up doors for people to see epilepsy in fiction and to continue to think and write about it meaningfully. And hey, at least no one turned evil and died in a magical burning castle.<\/p>\n","protected":false},"excerpt":{"rendered":"

All in all, 100 Sideways Miles<\/em> is not a perfect portrayal of what it means to have epilepsy. But it is respectful and spoke to me on unexpected levels.<\/p>\n","protected":false},"author":41,"featured_media":899,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_generate-full-width-content":"","kt_blocks_editor_width":""},"categories":[62,522],"tags":[138,80],"genre":[5],"age_category":[8],"disability":[93],"_links":{"self":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts\/901"}],"collection":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/users\/41"}],"replies":[{"embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/comments?post=901"}],"version-history":[{"count":3,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts\/901\/revisions"}],"predecessor-version":[{"id":7326,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts\/901\/revisions\/7326"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/media\/899"}],"wp:attachment":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/media?parent=901"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/categories?post=901"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/tags?post=901"},{"taxonomy":"genre","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/genre?post=901"},{"taxonomy":"age_category","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/age_category?post=901"},{"taxonomy":"disability","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/disability?post=901"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}