SMA News Forums Forums Our Community Adults ​With​ ​SMA Columnist Writes About Owning Her SMA Story

  • ryan-berhar

    Member
    April 23, 2019 at 11:18 pm

    I tend to feel a bit conflicted when I read columns like this. I’m all for making the best of a bad situation, but let’s also remember that it’s just that—bad. When it comes to “embracing” or, moreover, “celebrating” SMA, that’s where I sort of get lost. Though good things can come from it, which I discussed in my column last week, SMA is an overwhelmingly negative condition. That’s just how I take it.

    • katie-elizabeth-napiwocki

      Member
      April 24, 2019 at 7:44 am

      In my column, I acknowledge the many challenges presented by living with SMA. Is it easy? Nope. But, it’s all relative. I have often observed other people’s troubles in life and think to myself how grateful I am that I don’t have to deal with that particular issue. I choose to live with a grateful heart.

      In my opinion, we must be able to look beyond our own sad stories in order to grow and learn about the world. My column is about recognizing what we do have control over. I’ve learned to love myself and feel beautiful in the presence of my SMA, and I know I’ve been an uplifting role model for other young females out there with mobility challenges. I live as an advocate. When we don’t love ourselves, we cannot expect others to be able to love us. As a new columnist, I will say that my columns will always be overwhelmingly positive because that’s how I choose to live my life. It’s been a wonderful journey so far — not void of obstacles and dark days, but no journey ever is (SMA or not). People who would rather wallow in sadness will probably not enjoy what I have to say, but that’s OK. That’s part of putting your work out into the world as a writer; not everyone sees the world as you do.

    • deann-r

      Member
      April 25, 2019 at 12:17 pm

      Ryan, I don’t think SMA has to be a “bad” thing or a “good” thing. It just is what it is. Yes, sometimes it sucks, but like your previous column pointed out it has brought opportunities into our lives. I’m not sure if this is what Katie was trying to say in her column, but what I took away is that when you can accept yourself and your situation it can be easier for others to accept you as well. When that happens it can change your view of the world. Will situations still be difficult? Yes, but using the life lessons SMA has taught us it might be easier to navigate through.

    • kevin-schaefer

      Member
      April 25, 2019 at 12:39 pm

      Echoing what Katie and DeAnn said, I think a lot about the ways that having SMA has brought me to where I am, and informed my perspective on things. Like DeAnn said, it’s not necessarily a good or bad thing, it’s just a part of me and something that I’ve always lived with. I don’t think that this column, or mine, downplay the challenges that SMA brings. I openly write about the hardest things I’ve had to deal with as a result of SMA, but the reality is that all of us have challenges we have to face. It took me a while as well to grasp this concept, but once I did it was really liberating.

      Yeah, there are certainly days that suck, but things would be much worse if I just hated my situation and stayed that way. It wasn’t easy to get to the point where I am now, having caregivers, a career, an active social life, etc., but it was well worth the effort and challenges. I have SMA, and I still love my life. The two aren’t mutually exclusive, and that’s more what Katie was getting across here.

      Good discussion. I know this is kind of a heavy subject, but I think it’s important to talk about.

      Also, I know I’ve shared this column multiple times, but it’s one that ties into this discussion and articulates my thoughts: https://smanewstoday.com/2018/08/14/sma-awareness-month-curse-blessing/?amp.

      • ryan-berhar

        Member
        April 26, 2019 at 12:15 am

        I have to respectfully disagree with that. To say SMA is bad is the understatement of the century. I mean, we’re all fighting it (or at least trying to) with Spinraza, are we not? Now does that mean we can’t live rich, meaningful, fulfilling lives and are forced to wallow in misery? Absolutely not. I’m not remotely suggesting that. The attitudes you all have are admirable. But I’m just saying, let’s call a spade a spade here. Let’s not portray this as something it’s not. SMA is my mortal enemy every second of every day. There’s never a nano second when I think that having SMA is actually an overall good thing. Or that it’s molded me into who I am, and so it’s ultimately good or something like that.  So when people put a positive spin on having the disease itself—while that’s certainly your prerogative as someone who also lives with it—I can’t co-sign that. I realize that you all acknowledge the difficulties, and it’s possible I’m just totally missing the point, but it feels to me like some columns give SMA more positivity than it deserves.  I come away feeling conflicted.  My column is all about overcoming the disease and becoming mentally stronger from it. It’s about making the best of the atrocious hand I was dealt. It’s about finding little positives amid the struggle. It’s not about embracing or celebrating life with SMA. I’m not willing to go that far. Hopefully you all can at least understand where I’m coming from here.

      • lupa-f

        Member
        April 26, 2019 at 12:54 pm

        I’m definitely more on Ryan’s side of this, I don’t see the point of “celebrating” having a disease most of us would prefer not to have. But the article didn’t bother me too much until the very end where it says, “What’s so exhilarating about a normal life? Being rare is what makes us interesting.” It feels like it’s saying that SMA and having to deal with it is what makes us interesting. That would be pretty sad, but maybe I’m not interpreting that statement right.

      • ryan-berhar

        Member
        April 26, 2019 at 3:40 pm

        Lupa, that’s exactly how I take it as well.

  • deann-r

    Member
    April 25, 2019 at 12:52 pm

    Love it Katie! Brought back so many memories from my childhood. I pretty much used my wheelchair as my all-terrain vehicle. Might explain why the motors never held up. The bee anxiety is warranted. I once was set on top of a picnic table that was hiding a wasp nest. Five stings later I’m not a fan of anything that stings albeit I have learned staying calm is the best reaction. Although I love horses, I’m not a fan of riding them after being forced to at camp. Majestic creatures though. Not much can top freshly picked berries. The folks that buy them from the supermarket are missing out!

    Your self-confidence is awesome. My self-confidence is always a work in process. I agree with your analogy, ride the waves. When you fight the current it can wear you out and it doesn’t get you very far.

  • katie-elizabeth-napiwocki

    Member
    April 26, 2019 at 4:50 pm

    This discussion is not about taking “sides”. There isn’t a wrong answer. It’s merely about the type of perspective and attitude people with SMA exhibit toward living their life with SMA. How they see themselves, and how they choose to cope.

    If you connect with my writing and find the meaning and beauty within it, then that’s all I intended with this piece.

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