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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic has 38 replies, 6 voices, and was last updated 8 months, 1 week ago by Kevin Schaefer.

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      • #16533
        Kevin Schaefer
        Keymaster

        Hey everyone, I hope you all had a fantastic weekend.

        So as I posted about the other day, we’re launching this new “Disability in Media” forum here. This is a space for us to discuss books, movies, tv shows, music, and other media examples which in some way explore disability. Obviously we’ll focus on SMA and look for things created by people with SMA, but I also want to talk about media representation of people with disabilities in general. And as I said in the introductory post, feel free to share examples and post new topics.

        To start off, I wanted to spend the next few weeks or so discussing the popular memoir “Laughing At My Nightmare” by Shane Burcaw. This is a book I’ve written about before, and I had the other moderators here read it so we can kickoff the discussion. I imagine some of you here have read it, and even if you haven’t there’s plenty of time to do so and jump in on this discussion. It’s available on Amazon and in bookstores, but you can also download the audiobook here: https://www.googleadservices.com/pagead/aclk?sa=L&ai=DChcSEwiYzN2e8OvfAhUCi8gKHbuJAP0YABAAGgJxdQ&ohost=www.google.com&cid=CAESQOD2dnrJCnGR4l4G4GLDYBqOvbXL7vqa8WftZ1hJ8UYqW_Nm8EQAdz5C0hszy9JM9TNcCU3-e9I0hV2hDCD-Mfw&sig=AOD64_1aASWF9NroMJNvnaeM9ZVdzkHDVg&q&adurl&ved=2ahUKEwjKjtie8OvfAhWOneAKHZqfC1MQ0Qx6BAgLEAE.

        I wanted to start this discussion by asking a few questions about the introductory chapter. Here, Shane writes about being filmed in the back of a minivan while his brother helps him pee, as part of a documentary about his nonprofit. The first line reads:

        “The forest of pube-y hair sprouting from my brother’s calf bristles the tip of my nose as he stands over me on the floor of our rented minibus, yanking my shorts off.” (Burcaw, p. 8)

        Right off the bat, Shane gives readers a sense of his off-the-wall and subversive humor. Whereas many people are often afraid to ask people in wheelchairs about things like going to the bathroom and transferring out of a wheelchair, Shane puts all of this information out there in the opening pages.

        Here are my initial questions.

        1) How did you react to the humor here? Did it surprise you?

        2) How does Shane’s blunt humor and poking fun at his situations compare to other media portrayals of people with disabilities? In what ways does his approach to telling his story differ from other books about disability that you’ve read?

        3) From the get-go, did you find Shane and his story relatable as someone with SMA? If so, how?

      • #16560
        DeAnn R
        Keymaster

        Shane’s humor is a great way to connect with his audience. I think most of us that have a disability can relate to awkward situations such as these. What’s possibly even more humorous is that these are every day occurrences for us, well except for the camera team. I think when most people see a disabled person they have no idea what goes into the process of going to the bathroom or getting up in the morning. All they see is the person in the wheelchair not knowing how we get there. Of course everyone’s routine differs but Shane is able to convey in a witty way that it’s a bit more of a process.

        In chapter 1 I love the dynamics Shane has with his brother. From an onlooker their banter could seem like they might dislike each other, or that maybe it’s unfair that Shane’s brother has to take care of him. But you can tell that it’s brotherly love, and it’s not something he has to do out of obligation but it’s just something he does for his brother. My sister and I definitely have different dynamics. We certainly wouldn’t be going on a road trip together.

        Another thing about that first chapter that’s relatable and again most people probably take for granted is getting out of bed when you feel like it. Yes, ultimately it’s up to me, but sometimes it doesn’t really feel like it because I don’t want to disturb someone to get me up. Does that make sense? Now that I’m on my own it’s a little different because I have a set time.

        • #16604
          Kevin Schaefer
          Keymaster

          I remember getting periodically asked in elementary and middle school how I go to the bathroom. I think kids that age are both curious and unafraid to ask those questions, and I really didn’t mind answering them. It’s typically adults who are terrified to ask questions like that, and when they do they usually fumble through them. I find this hilarious, especially because I write openly about my daily routine and the things I need help with.

          Yeah, looking at the banter between Shane and his brother, it reminds me so much of my relationship with my brother and my caregiver. If my caregiver and I recorded some of our conversations, people would probably think we’re horrible to each other lol. But like you said we insult each other in a brotherly love fashion. It’s the same with my brother and I.

          One of the funniest parts in the entire book for me is when Shane recounts a story from going to MDA camp, and doing an underwater breathing contest with the kid he couldn’t stand. He writes about the counselors holding him and the kid underwater in the pool, and how if a stranger were to walk by they’d wonder what kind of heinous people would drown a bunch of disabled kids. That part still makes me laugh every time I read it, and it’s the kind of joke that only a person with a disability can deliver properly.

          I totally understand the frustration of being on other people’s schedules, and having to get up at a certain time. Even when we have caregivers, we’re still at the mercy of them and their schedules, and we can’t just get up when we feel like it. I really like how Shane writes about the specifics of his schedule in the opening chapter. Granted, it’s changed since the time he wrote the book, and he now lives with his girlfriend in a different state. But the same concept of relying on others still applies.

          • #16700
            DeAnn R
            Keymaster

            That kid at camp reminds me of a girl I attended school with.  I couldn’t stand her and I think people thought just because we were in wheelchairs we should be besties.  Don’t get me wrong, I have friends in wheelchairs, but that’s not why we’re friends.  It’s more because we have common interests.  Do you guys have friends in wheelchairs?

            It sure did bring back memories of swimming lessons.  I never got passed entry level.  My Mom would put me in swimming position with my head under water and I would nod when I needed her to lift my head out of the water.  Boy was I fearless.  I do recall a dangerous experience with a wave pool.  Note, when the buzzer sounds make sure your parent is hanging on tight.

          • #16702
            Kevin Schaefer
            Keymaster

            I have a lot more friends in wheelchairs and with disabilities now than I used to, but yeah I hate that stigma of “You’re both disabled! You should be best friends!” Through going to conferences and just meeting people, I have cultivated some strong friendships with other SMA people and people with other disabilities. But like you said it’s more because we’ve connected as people, not just because we’re in wheelchairs.

      • #16561
        Ryan Berhar
        Keymaster

        The humor is awesome, because it sets the tone for the rest of the book. I wasn’t surprised by it, because I knew a little about Shane before I read the book. I like the irreverence, because it doesn’t depict a sense of doom and gloom.

        • #16607
          Kevin Schaefer
          Keymaster

          Absolutely. I especially like how the title is subversive in that respect. He bluntly calls SMA his “nightmare,” but throughout the book breaks down how he’s flipped that idea on its heels and lived a fantastic life.

          I’m curious, were there any particular stories or jokes in the book that stood out to you?

          • #16707
            Ryan Berhar
            Keymaster

            The broken femur stood out, because I suffered the same injury. I also thought it was cool how his cousin was basically his “nurse” at school.

          • #16725
            Kevin Schaefer
            Keymaster

            I could definitely relate to that as well. I’ve broken my femur multiple times, and in different ways and scenarios.

            And I thought his relationship with his cousin was cool as well. I always had an adult aid with me from elementary through high school, but it’s great that his cousin was his aid. It takes away a lot of the awkwardness of having an adult always at your side. I experienced that freedom in college.

      • #16689
        Halsey Blocher
        Participant

        I absolutely love this book! Shane’s sense of humor caught me a bit off guard at first, but it didn’t take long to adjust to it. Even though his sense of humor is a bit more inappropriate than mine, I laughed all the way through. I love how is so open and honest about every aspect of his like, and the same time he can put a light and humorous twist on even the worst situations. I think a lot of people would shocked by his honesty and bluntness, but I think it opens up the possibility for some great discussions and better understanding of how we live our lives. Also, after reading the book I very much wanted to train my turtle to be a service turtle.

        • #16691
          Kevin Schaefer
          Keymaster

          I love how it’s intentionally shocking and that it doesn’t sugarcoat anything. The first time I read it a few years ago, I loved how Shane decided to be so blunt, as his stories help people understand what life with SMA is like. Immediately he gets across the idea that we’re just people with normal desires and personalities, but that we have a different way of doing things.

          Do you have any favorite parts or stories from the book? And yes, a service turtle would be awesome.

          • #16711
            Halsey Blocher
            Participant

            I loved the part when he would yell football plays while getting shots! I suggested to my nurse that I could do the same when she gives my shots. We both agreed it would be unwise as it would distract her, and since I’m not a football fan, the only thing I could think of was “touchdown!”

          • #16724
            Kevin Schaefer
            Keymaster

            That part is great! I like to crack jokes with nurses and doctors as well. When I get my Spinraza injections, my neurologist is always the person who puts the medicine in. The radiologist always asks me how I’m feeling before the procedure, and I say: “I’m good. Just make sure Ed (my neurologist) doesn’t screw up.”

      • #16780
        Kevin Schaefer
        Keymaster

        Since Ryan brought this up, what did you all think about Shane having his cousin as his aid when they were in school together? This was a really unique relationship, and it’s cool that they were able to have this setup. I always had an adult aid with me from elementary school through high school (I had a few different people who worked with me), but it’s cool that Shane had a family member his age fill this role. What did you all think about this?

        • #16807
          DeAnn R
          Keymaster

          Throughout the day I never had an aid with me, except when I needed help with the bathroom thing.  I can certainly see how having someone your age helping in the classroom would create less stigma.  It’s great that they got along so well.  My cousins wouldn’t have taken on that role.

          • #16811
            Kevin Schaefer
            Keymaster

            Yeah my aids were always nice and all, but still I really enjoyed the freedom in college of not having someone with me all the time. And if I ever needed help getting somewhere or whatever, friends were always there to help.

      • #16825
        Kevin Schaefer
        Keymaster

        I know this is jumping ahead in the book a little, but I wanted to talk about Shane’s college transition this week. The first time I read this book was when I was in college, and our experiences in this area were pretty similar. Like Shane, I went to a university that was really close to my house, and I just commuted throughout my time as a student.

        In many ways I was envious of the thousands of students who got to live on campus and have that experience of being away from home. I felt like I was missing something, despite how active I was in student life and in student organizations. Eventually, I did figure out a better system for myself, and through hiring caregivers I became much more independent. This made my college experience all the better, and at that point I was content living at home because I still had plenty of independence.

        What did you all think about this part of the book? In what ways was Shane’s college experience similar to yours? In what ways was it different? Were there any stories or tidbits here that stood out to you?

      • #16839
        DeAnn R
        Keymaster

        From what I hear, this is a typical college experience for someone with SMA.  Heck I know lots of people who don’t have SMA and live at home while going to school.  I did choose a college that was about 2 1/2 hours away though so I lived on campus the first year, then got an apartment close to campus for the remaining years.  It had it’s challenges but was a way I could prove my independence.  I think my dad was skeptical, but he didn’t stop me. To me it felt kind of like if I didn’t do it I’d be stuck at home forever.  My only regret is not choosing a college in a warmer climate, lol.

      • #16938
        Kevin Schaefer
        Keymaster

        Since tomorrow’s February and Valentines Day is coming up, it’s only fitting that we talk about the parts of the book that deal with dating, romance and sex. We’re all adults here, and we can talk about these subjects honestly.

        There’s a lot to unpack here, but let’s start with the chapter about Shane’s first sexual experience. The first time I read it, I was struck by just how vulnerable Shane made himself, and how he relied on his first girlfriend to pick him up from his chair and get him to bed so that they could be intimate with each other.

        Honestly, it was reading things like this that gave me the confidence to ask girls to drive me when hanging out, or to ask girls for help with things like eating and lifting my arms. The boldest thing I ever did in this regard was to ask a close female friend to go swimming with me last year. The clinic I go to for water therapy has swim club hours, and my pt encouraged me to attend with a friend or caregiver. It went great, and my friend had no problem helping me. She moved to Phoenix a few months ago, but we remain good friends. She’s actually going to visit me in California in June for the Cure SMA conference, and we’re going to hang out in Disneyland.

        What did you take away from this chapter? Did you find Shane’s initial difficulties with finding love relatable? Did you find any encouragement from his stories? I’d love to hear your thoughts.

        • #16941
          Ryan Berhar
          Keymaster

          It’s always nice to be reminded that we can, you know, do certain things in spite of our disability. Haha

          • #16957
            Kevin Schaefer
            Keymaster

            Absolutely. I think it’s so easy to get caught up in the mentality of “I have SMA, and therefore I can’t (fill in the blank).” When you read this chapter, as well as others about Shane’s love life, were you challenged in any specific ways in regards to how you think about this subject? Like, did it give you more confidence about being dateable and finding romance? Were there any passages from the book about dating that stood out to you?

          • #16969
            Ryan Berhar
            Keymaster

            Nothing necessarily stood out in particular, but again, it’s just nice to read those reminders. What strikes me about Shane is his willingness to put himself out there I guess you could say. With regard to girls or otherwise, he succeeds by going for it.

          • #16991
            Kevin Schaefer
            Keymaster

            I agree. Regardless of personality and whether we’re introverts or extroverts, I think it’s important to be reminded of how much impact confidence can have. Putting yourself out there goes a long way.

      • #16977
        DeAnn R
        Keymaster

        It’s refreshing that he’s so open and honest about his  experiences and relationships.  To be honest I doubt he was fooling anyone as a teenager asking for tissues for a drippy nose, but points for creativity.  In this book he seems so in love, but if you follow the vlog that’s not the person he’s with now, at least if I did my math correctly from when the book was published.  I just bring this up because it goes to show not every relationship goes how you’d hope and he’s again found a meaningful relationship.

        • #16992
          Kevin Schaefer
          Keymaster

          He is in a different relationship now than when he was at the time this book was written. You can actually read more about the trajectory of his relationships in Ben Mattlin’s book “In Sickness and in Health.” Mattlin, who also has SMA, compiled a bunch of stories of real-life inter-abled couples in this book, and Shane and his girlfriend Hannah are featured in it.

          And yeah, his openness certainly left an impact on me as well. Do you watch his current YouTube videos that he does with Hannah? Those are pretty great.

          • #17037
            DeAnn R
            Keymaster

            I do follow their vlog.  It’s great that they have such a wide audience.  In their latest vlog Hannah was upset because a comment she made about a disabled boy leading a happy fulfilled life was deleted on social media. Totally get where she’s coming from.  Shane’s book is a great example of what she’s talking about.   Sure life has setbacks, like a broken leg, but you just keep going.

      • #17097
        Kevin Schaefer
        Keymaster

        One of my favorite parts in the book is when Shane writes about when he entered college, and he had to ask a random student sitting next to him to adjust his head right in the middle of class. I love how he tells this story, and how it reminded me of similar awkward situations that I’ve been in when it comes to asking strangers for help. I’ve asked strangers to move my hands, help me get set up with food, etc. It’s always at least somewhat awkward, but it helps to laugh at these moments.

        Did this scene remind you of any stories from your life? What’s the most awkward thing you’ve ever had to ask a stranger for help with?

        • #17101
          Ryan Berhar
          Participant

          I don’t think I’ve ever asked a stranger for help, believe it or not.

          • #17112
            Kevin Schaefer
            Keymaster

            It’s not an easy thing to do. In college I kind of had to, but I also hang out by myself sometimes at a movie theater or bookstore. In these situations I have to ask employees or people passing by for help with little things.

      • #17126
        Ryan Berhar
        Participant

        So I don’t mean to be critical of Shane when I say this, but the biggest theme i noticed throughout the book was how he often wouldn’t get out of his own way. Like when he broke his femur, he downplayed it, only making it worse. He also refused to get a feeding tube for a long time. As a kid, he waited so long to pee that he’d frequently wet his pants. Just a few examples of a recurring  trend. Did you guys pick up on that? Can you relate?

        • #17127
          Kevin Schaefer
          Keymaster

          That’s a good observation. I can definitely relate though. Heck, the last time I broke my leg, I was out of town at a medical conference. I fell out of my sling during a hoyer lift transfer in the hotel bathroom, and like Shane I also thought it was just bruised at first. My Mom and I went home the next day, but my pain worsened that night. Still, I wasn’t in the hospital and on an x-ray table till almost 48 hours after the accident.

          What can I say? A lot of us with SMA push ourselves and do stupid things. Especially when we’re younger we make mistakes. I’ve also downplayed sicknesses and injuries before, so I could definitely relate to Shane. I guess I don’t like to make a big deal when I’m sick or injured, unless I absolutely have to.

          • #17150
            Ryan Berhar
            Participant

            Yeah. I too broke my femur, and I didn’t get it looked at till the following day. I wasn’t trying to downplay it, but it genuinely didn’t hurt when I was sitting in my chair, so I thought it couldn’t possibly be broken.

            I would say that I sometimes try to fight off sicknesses on my own too long. I want to stay out of the hospital so badly, but sometimes it’s best to get out in front of it early. Like when I got metabolic acidosis in 2013, I didn’t go to the hospital for like a couple days, and I ended up in a coma because of it. I’ve basically decided that if I ever throw up again, I’m going straight to the hospital.

        • #17163
          DeAnn R
          Keymaster

          I can relate.  When I broke my arm I felt it pop, so knew something was wrong.  It was a Sunday, so at first I didn’t want to go in because I didn’t want to be a bother.  Someone said that’s what the ER was for, so I conceded.  In my case a lot of the time I don’t want to be a burden, so I just hope it’ll get better.  Kind of the same when I’m sick.  I know a lot of extra is involved and I don’t want to cause worry.  I think I’ve gotten better at knowing my limits over time though.

          With the bathroom thing I think that’s more a case of not wanting our disability interfering with our lives.  It’s a process, and sometimes I’d prefer to just hold it than stop what I’m doing.  As with the above issue I’ve gotten pretty good at knowing my limits.  Or as I heard somewhere I’ve become well versed in “pee-math.”

      • #17421
        Kevin Schaefer
        Keymaster

        Not sure if you all saw, but Shane and his girlfriend Hannah were recently featured on the Today Show: https://www.today.com/today/amp/tdna148377. Pretty cool!

        • #17536
          DeAnn R
          Keymaster

          That was great to watch!

      • #17636
        Mike B
        Participant

        I just ordered the book today and look forward to joining the discussion.

        • #17658
          Kevin Schaefer
          Keymaster

          Great! Looking forward to hearing your thoughts Mike.

      • #18148
        Mike B
        Participant

        I ended up liking Laughing at My Nightmare much more than I thought I would. Shane’s humor and attitude were refreshing and I’m glad find out that his story has resonated with a broader audience. The funniest and favorite parts for me were the snippets of conversation between Shane and his brother. Several years ago (probably when he was finishing this book) I saw a video with Shane which was largely all doom and gloom and seemed designed to elicit pity about dying an early and horrible death. I was so pleased that the book largely focused on living, loving and embracing life’s challenges instead of the alternative. I have pre-ordered his next book and am looking forward to reading and discussing after it comes out at end of April 2019.

        • #18157
          Kevin Schaefer
          Keymaster

          Thanks Mike!

          Was that a news story you found? I wonder if a media outlet ran something on him when he was just staring out, and that it was more sensational and “doom and gloom.” Unfortunately this happens a lot with profiles of people with disabilities.

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