• Sponsored Post

    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 6 replies, 3 voices, and was last updated 2 months, 4 weeks ago by DeAnn R.

    • Author
      Posts
      • #20162
        DeAnn R
        Keymaster

        Hey guys, summer is winding down (say it ain’t so!) and I was thinking about grabbing a book on my phone. That way I can enjoy the last remnants of summer outside and still feel I’ve accomplished something. I’ve decided to go for Shane’s latest book “Strangers Assume My Girlfriend Is My Nurse.” If you guys want to read it along with me I’ll post on the first few chapters next week. If you’ve already read it what’d you think? Just don’t give me any spoilers!

      • #20166
        Kevin Schaefer
        Keymaster

        Great pick! I read it a few months ago and loved it. Looking forward to hearing your thoughts.

      • #20173
        Ryan Berhar
        Participant

        I’ve read it too. It was great. Maybe even better than LAMN.

      • #20260
        DeAnn R
        Keymaster

        Okay everyone, I figured I’d break up the book so we can discuss it more in depth. Let’s start with the introduction and chapters 1-5. First of all I loved how Shane briefly discussed SMA in the intro. If you’re reading this book I’m guessing you’ve read his first book, or at least are familiar with SMA. If not he gave enough explanation to get the gist. How do you guys explain SMA?

        Chapter One: Eigth-Grade Pee Fiasco. Much like Shane I too pride myself on how long I can hold it. Can’t go 24 hours, but I’ve gone 13 before. I’ve also had a couple incidents where it just didn’t work out, unfortunately. Love how upfront Shane is about these types of situations. In school I did leave class early right before lunch for a bathroom break. Honestly I don’t think the other kids had a clue why I left. If anything they were jealous I got to skip out early. Still sucked because it also cut into my lunch break. As everyone was finishing up I was just starting. More often than not I’d just eat a little to finish quicker. By the end of the day I was starving. How did you handle the bathroom thing in school?

        Chapter Two: Ron. I found this chapter interesting because staying home alone has never bothered me. I’ve never feared being harmed by a stranger or intruder. Guess I figured it’d be pretty sad if someone wanted to harm a disabled person, not that it can’t happen. Kidnapping or sexual assault would be pretty difficult though, since they’d have to figure out how to unbuckle my seat-belt first. Just figure it’d be too much work. My closest “Ron” incident was a guy knocking on the door in the middle of the night pleading to let him in promising he was clean. Obviously I had my PCA call the cops instead. Have you had any “Ron” incidents? How do you feel being left alone?

        Chapter Three: Locked Out. Obviously Ron left quite an impression on Shane. So much so he developed some irrational fears. Even though I don’t mind being home alone, I can understand where Shane’s coming from. I can get a little anxiety if I use an elevator alone or get shut in an office room at a doctors office or something. All kinds of scenarios run through my head, but I know eventually someone will come along. Shane realized that by overreacting it actually made things more difficult in the long run. What are your irrational fears? How have you coped?

        Chapter Four: Road Rage and Rag Dolls. Early on I knew driving a vehicle was beyond my limits, so like Shane I rely on others to drive. If someone other than my Mom drives I have to be super attentive to maintain my balance. Basically I think Shane used this chapter to say consider what people are going through before you react. Is that what you got out of it?

        Chapter Five: Strangers Assume My Girlfriend Is My Nurse. Great chapter. For a long time I considered myself undateable. Spellcheck says that’s the wrong word, but I’m sticking with it. Because of Shane and several others in the SMA community I know that’s untrue, it’s still difficult to put myself out there. I certainly don’t dwell on it, and if it’s meant to happen it will. In this chapter Shane makes the point that automatically people assume that whoever is with him is a caregiver of some sort. Do you guys get this a lot? What are your stories regarding relationships? How do you “make it work”?

        Alright folks. That’s my synopsis of chapters 1-5. What have you gleaned so far? Can you relate to his stories? What do you think about his writing style?

      • #20272
        Ryan Berhar
        Participant

        The whole “Ron” story was probably the most memorable part of the book for me. He told it in an interesting way that was also funny. Sometimes if I hear a noise or something, I’ll say to my Gma “Maybe it’s Ron!”. Lol. I’ve never experienced any sort of home invasion. It’s something I was actually pretty scared of as a kid, but I decided it’s not worth worrying about.

      • #20416
        DeAnn R
        Keymaster

        Time to discuss the next chapters. Let’s tackle chapters 6-13. I’ll try to keep it as short as possible, so if I miss anything you feel was important let me know.

        Chapter 6: Buffalo.
        Even though I don’t travel much I connected with this chapter. Shane and his brother took somewhat of a spur of the moment trip to Buffalo. Of course the unexpected mishaps along the way made it a memorable trip. I’ve found that to be the case as well. Like when we tipped the hoyer over trying to get me into the hotel bed. Thank goodness for the soft landing. Have you had any travel mishaps?

        Chapter 7: Reddit.
        In this chapter Shane uses a story about a post he made to Reddit was removed because the content was deemed “sad.” Obviously is was nothing of the sort but goes a long way in showing how people consider disability as sad and pitiful. Especially with those MDA telethons that yes, I too, participated in. I agree with Shane, this is a stigma that needs changing. Do you guys remember the telethons?

        Chapter 8: Laughing at Our Nightmare.
        It was fun reading about the early days of their non-profit. Shane and his cousin went into this endeavor pretty naively, but learned quickly therefore turning it into a success.

        Chapter 9: Jerika.
        When Shane started talking about this story it brought me back. I remember it well. Again it has to do with the thinking that someone who has SMA must be miserable and have a life not worth living. Unfortunately the press jumped on the story that proves to the world this must be true. In a lot of ways I agree with Shane that you can have a bright future with SMA. You don’t have to live in pain. However, I do feel Shane was a bit harsh in his conclusion to the chapter. Just like I don’t like people judging my life to be miserable I shouldn’t judge someone who feels their life is. Of course I do everything in my power to convince them otherwise, but in the end it’s their choice. What are your opinions on this?

        Chapter 10: Beaufort
        I’m glad Shane followed up the last chapter with more of a lighthearted one. Another adventure with his brother got him into another precarious situation. It reminded me of the time I let my nieces drive my old wheelchair. Of course they drove it right off the sidewalk getting it stuck in the mud. With a little persistence, and some cardboard, we got it! Bet they won’t do that again. Nor will Shane. Any getting stuck stories?

        Chapter 11: Rant.
        Surprisingly I don’t get a lot of the reactions Shane mentions while dining out. Maybe it’s because I don’t have a petite stature, or maybe I’m more assertive when we go out. I’m not sure. Of course I do get a lot of stares from kids or the occasional odd glance when someone sees me catapult food into my mouth. I just shrug it off because if you haven’t seen it it probably does look weird. Do you deal with this when you go out? How do you react?

        Chapter 12: Deadly Ducks and Cheese Curds.
        While Shane is a natural comedian, it really is a product of his insecurities. Shane explains how he uses humor to deflect awkward situations. In this chapter Shane also details the beginning of his relationship with Hannah. It’s like second nature for Hannah to help. She doesn’t think twice about shoving a cheese curd into his mouth and they can laugh together at those awkward moments. How do you guys deal with insecurities?

        Chapter 13: The Elevator
        It comes a point in our lives where independence is paramount. With SMA, sometimes it’s easier said than done. Every situation is different, and in this chapter Shane explains how he gained more independence from his parents. If you can move out, great, if not it’s still important to have your own space. I like how he did this endeavor on his own as well from planning to coordinating and seeing it through to the end. Although Shane has his reasoning why having outside help wouldn’t work for him, I think it’s a viable option for many of us. It’s certainly not easy, but it does add another layer of independence. Again, everyone is different and needs to find what works for them.

        This brings us to about the halfway point. Are you enjoying the book? So far I think it’s been an easy read that’s made me reflect on my own experiences.

      • #20536
        DeAnn R
        Keymaster

        For the last half of the book, I’m not going to give you a chapter play by play.  I’d rather just give you an overall idea of where the book is headed.  Let’s just say it includes no less than sex, drugs and scandal.  Okay, maybe living with someone before you’re married these days isn’t exactly scandalous.  Although there was a marijuana story, Shane devotes a whole chapter to his experience with the drug Spinraza.  He also got into a lot of detail on how his relationship with Hannah evolved.

        Throughout the entire book I loved seeing how Shane developed as a person.  His disability has shaped who he is, but he hasn’t let it stop him from living a fulfilled life.  SMA has given Shane a lot to look back on and laugh about.  What have been your takeaways?

    Viewing 6 reply threads
    • You must be logged in to reply to this topic.

    ©2019 KLEO Template a premium and multipurpose theme from Seventh Queen

    CONTACT US

    We're not around right now. But you can send us an email and we'll get back to you, asap.

    Sending
    or

    Log in with your credentials

    or    

    Forgot your details?

    or

    Create Account

    Copyright © 2017-2019 All rights reserved.