Good Can Come From the Intrinsically Bad

[deann-r]

Great article Ryan. I can totally get where you’re coming from. Nobody welcomes SMA with open arms, and yes we do everything in our power to stop it, slow it and fight it. Here’s my issue. Whether I like it or not SMA is a part of me. By saying SMA is bad, it feels like saying part of who I am is bad, and I can’t in good conscious do that. If I did, I feel like it would hold me back. Am I saying SMA is good? Absolutely not. SMA is something that I live with. I’ve said it before, for me SMA just is what it is.

[ryan-berhar]

Thanks. I understand where you’re coming from as well. Definitely do what is necessary to remain positive. I’d say that it’s possible for me to compartmentalize (I guess that’s the appropriate word). Like yeah, part of me is bad, but it’s not my fault, so I don’t need to feel bad about it.

[lupa-f]

This reminds me of a bit of controversy about some dialogue in a recent Game of Thrones episode. One of the female characters said she’s a stronger, better person because of some horrible things that happened to her. It was rightly called out that that is a terrible message to send, that these awful things were necessary to make her as capable as she became.

When I see people talking about how SMA is what makes them a special person today, I sort of feel the same way, that it’s a terrible message, that we needed this terrible thing to happen to us to make us good, strong people. I know I had to make different choices because of SMA, but I can’t say any of them necessarily made me a better person than if I had done things differently if I didn’t have SMA. I know I still would have been a smart, interesting, and capable person if I never had SMA and I’m sure all of you would have been too.

[ryan-berhar]

I mean, who’s to say what any of us would be like if we didn’t have SMA? Perhaps we are better because of it. But my point is that even if that’s true, SMA itself is not an intrinsically good thing. I wanted to make that distinction.

[katie-elizabeth-napiwocki]

We grow and evolve from the hardships we face in life, as well as the joys we feel.  I would not be the person I am today without SMA — it is part of me, and I don’t think there are many parts of me that are bad.  Okay, mayyybe my cooking skills.

Living with SMA has helped me become strong, compassionate, resilient, and creative.  Some of my friends, family, coworkers, and other acquaintances over the years have told me how I’ve touched their life — how my life story with SMA has deeply impacted their view on this one blink of a lifetime we live, and in turn, they put more goodness & light into the world.  Without SMA, I would’ve never met my significant other because we met through the MDA.  So yes, my life with SMA has been a beautiful thing and that’s the positive message I’ll always choose to send out to the world.  🙂

[lupa-f]

“Living with SMA has helped me become strong, compassionate, resilient, and creative.”

You don’t think you would have had those qualities without SMA? I guess it feels like you’re saying SMA is a good thing because without it you wouldn’t have those qualities and I don’t believe that’s true. I’d never tell a child diagnosed with SMA to not take any of the new treatments because “SMA makes you strong, compassionate, resilient, and creative.”

[katie-elizabeth-napiwocki]

All I can say is that I always encourage everyone to live the very best life they can.  Echoing what Kevin says below:  we all have different perspectives to share.

Have a wonderful weekend, everyone! Get out and enjoy the beautiful spring weather. 😊

[kevin-schaefer]

I’ve been following this discussion, and I want to thank everyone for sharing their perspectives. The way you see your disability isn’t an easy topic to discuss, and it’s ok to have different viewpoints. Let’s just recognize that, as I don’t want this chat to get unnecessarily heated. We’re here to support each other, even when we disagree.

Thanks everyone, and hope you all have a great weekend.