SMA News Forums Forums Our Community Adults ​With​ ​SMA Finding Connection through the Internet

  • Finding Connection through the Internet

    Posted by brianna-albers on January 15, 2019 at 7:00 am

    Hi all! I thought I’d throw up a link to my latest column, which came out yesterday. Apart from my work at SMA News Today, I freelance as an editor and also write poetry, essays, and long-form genre fiction. It can be tedious at times, especially when I put so much of myself into my work only to have it pass through the waters of the internet largely unnoticed, but sometimes I get lucky—like I did last Tuesday.

    One of my essays was recently published by Fanzine, and one of my heroes, a voice actor, read and tweeted about it. The tweet garnered a ridiculous amount of support for the essay, and the company the actor works for—the company that produces my favorite Dungeons & Dragons livestream—actually reached out to me and asked if they could send me something in the mail. It was a complete surprise, and I’ve been riding the high of getting noticed by a celebrity ever since.

    The essay was about illness and hypochondria and death, so it was extremely personal, something I didn’t expect people to identify with. But they did! I could barely keep up with messages from people claiming I somehow managed to put their exact experience into words. I think that, at least for me, I get stuck in this “SMA bubble,” cut off and isolated, trapped in my parents’ basement. But the internet keeps reminding me that there’s an entire world out there, a world with people I would never expect to connect with in such a deeply vulnerable way. It gives me hope and encourages me to keep writing, even when the writing seems pointless because you never really know who you might touch with your words.

    Do you ever feel cut off from the people who “get” what you’re going through? How do you cope with those feelings of isolation? Has the internet been helpful to you at all?

    brianna-albers replied 5 years, 1 month ago 3 Members · 4 Replies
  • 4 Replies
  • ryan-berhar-2

    January 15, 2019 at 4:07 pm

    Congratulations on that! Of course I feel cut off from those who “get it”, because I seldom encounter them in person. I’ve felt less isolated in that regard, however, since I started working at BioNews. Even though it’s not in person, I get to interact with you all on a daily basis.

    • brianna-albers

      January 18, 2019 at 5:06 pm

      Thanks, Ryan! And I bet! I’ve found that being in community with other disabled people can be helpful, especially if you share a condition. It’s nice being able to talk about things you have in common.

  • deann-r

    January 16, 2019 at 11:02 am

    That’s awesome!  It’s kind of funny, I’ve done my best writing during emotional events in my life.  When I broke my arm I wrote a comedic essay for a contest that scored me a nice product bundle.  They had no idea it was written one handed with my first experience using an on-screen keyboard.  Another article was actually published in a magazine called Just Labs.  It was shortly after I had lost my first service dog and had just gotten my current service dog Roy.  Neither were as personal as your essay, but I know the reason they had any success was because of the personal connection.

    College was my first experience with people who I would consider “get it.”  Of course they have their own struggles, but they could at least relate.  I’m still friends with a couple of them, although it’s difficult to get together because of our various disabilities and the fact they live several hours away.  We keep in touch over the phone and later this year they may be able to make it up this way for my birthday party.

    Social media has been a great way to stay connected and make connections.  Such a thing didn’t exist when I was young.  Somehow though I still feel like I’m missing the genuine connection you get person to person.  But then again I feel awkward in social gatherings, so typically avoid them.  Does that make sense?

    • brianna-albers

      January 18, 2019 at 5:13 pm

      I write everything via on-screen keyboard, so I completely understand how tiring and time-consuming it can be. That’s awesome though! It really is amazing how people connect over an emotionally-charged situation – the written word can be so powerful!

      I totally understand that. I was just talking to my therapist yesterday about how rare it is for me to feel anything but awkward when I’m around people. I have a small group of friends I’m comfortable with, but I’m working on getting over the social anxiety of being around people so I can pursue the kind of connection I’m looking for. But I’m glad you’ve kept in touch with people from college and that social media has been a resource for you! In my experience, every little bit helps.

Log in to reply.