SMA News Forums Forums Our Community Adults ​With​ ​SMA The Importance of Vulnerability

  • The Importance of Vulnerability

    Posted by kevin-schaefer on February 4, 2019 at 11:00 am

    I’ve been thinking a lot about the good changes that have happened in my life over the last few years, and I think a lot of it has to do with me being vulnerable. Let me explain.

    I have to be vulnerable with my caregivers, especially new ones. Just this past Saturday, I had a new caregiver from the agency that I just started working with. The first time I met her I was in bed, undressed. It’s not the first time I’ve done this, but it’s always awkward. Still, this person worked out great, and she did a great job handling my routine and listening to me.

    I have to be vulnerable with my writing. Since writing my column for SMA News Today, and even before then when I started writing about my disability, I’ve had to be fully open and transparent about living with SMA. This isn’t always easy, especially when I write about topics like death, my care needs, dating and other deeply personal subjects. Yet by doing so, I’ve connected with people in the SMA community all over the place. Writing this column also led me to a full-time job here at Bionews, and it’s been a wild ride. I look forward to what opportunities my writing will bring me in the future.

    I have to be vulnerable with my friends and family. This is the hardest part, and the most important. If I hadn’t been vulnerable with my parents years ago about wanting more independence, I probably wouldn’t have caregivers today. I’ve also had to be vulnerable with friends and ask them to help me with everything from getting rides to moving my arms when I’m unable to. Heck, even strangers have helped me in the past with helping me reposition my hands.

    It’s never easy to be vulnerable with people, but it’s just an essential part of our lives when we have SMA. I can say without a doubt that choosing to be vulnerable has transformed my life for the better.

    How does vulnerability play a role in your life? What areas of your life do you have trouble being vulnerable in?

    kevin-schaefer replied 5 years, 4 months ago 2 Members · 2 Replies
  • 2 Replies
  • ryan-berhar-2

    February 4, 2019 at 11:06 pm

    Intriguing point. I think “vulnerable” is an interesting word choice. Being susceptible to physical or emotional attack or harm (I looked it up to be sure lol) doesn’t seem like something we should strive for. I guess since that’s something we with SMA inevitably have to deal with, it’s best to accept it and make the best of it. Is that kinda where you’re going with this?

    • kevin-schaefer

      February 5, 2019 at 10:26 am

      I get what you mean, but I think vulnerability can be a strength. When you make yourself seen, and accept the things you have control over and the things you don’t, it can be really liberating. This article kind of explains this idea:

Log in to reply.