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  • Finding and Building Community

    Posted by brianna-albers on December 4, 2018 at 11:00 am

    Hi everyone! I hope December is treating you well so far!

    I recently started talking with an SMA patient (type II) who lives in Singapore. She’s a few years younger than me, but overall we have pretty similar stories, so it’s been fun comparing symptoms and the general “experience” of living with a disability.

    The other day she asked me if I go out very much. She mentioned that pain and fatigue have really kept her from leaving the house of late, and I told her that, due to chronic tension headaches, I’ve had to scale back my outings as well. The whole conversation got me thinking about community and how we deal with, in a very real sense, being “cut off” from the rest of the world.

    Personally, I often go on lockdown during the winter to keep from getting sick. I go out occasionally, but I still end up feeling disconnected. I’m lucky in that I have a very robust community online, but it doesn’t feel the same as actually being in the same room with someone. Winters are pretty hard on me in that respect.

    I’m curious as to how you go about finding and building community. Do you leave the house often, or do you prefer to stay at home? How does that affect your social life, if at all?

    ryan-berhar-2 replied 5 years, 5 months ago 6 Members · 12 Replies
  • 12 Replies
  • kevin-schaefer

    Member
    December 4, 2018 at 12:29 pm

    Great question Brianna. It certainly is more difficult for those of us with SMA to get out during this time. Even if it’s less cold in some states, it’s still cold and flu season and we have to be careful.

    Granted, I am stubborn, and I still go out more than I probably should during the winter, but I think it’s unhealthy for us to isolate ourselves too much. I still go to movies and dinners with friends, church and my local comic shop.

    As far as how to build community, there are several ways to go about it. You do online school and I work from home, so I understand the struggle of feeling isolated. For me, I met so many people in college, but after graduation everyone goes all over the place. Still, I try to keep in touch with as many of those friends as I can, and there are a few who still live near me and who I hang out with regularly.

    Still, the biggest way I’ve been able to build a new community is through my NC Comicon community. Everyone there is friendly and close-knit, and we all live in the same state. I’ve made friends this way through going to cons, hanging out at my local comic shop, podcasting and a graphic novel discussion club. In fact, I’m meeting with an artist friend and his girlfriend tonight to talk about a project we want to do together.

    Have you joined any poetry or writing clubs? There are plenty out there, and if you can’t find a good one you could try starting one. Just meeting at a Barnes & Noble or coffee shop works great. I know that I wouldn’t be as passionate about writing comics and podcasting if I weren’t plugged into a solid geek community.

    • brianna-albers

      Member
      January 4, 2019 at 1:35 pm

      That’s so great that you have such a robust community! I still have some ties with my gaming community but have been struggling to find accessible games to play, so that’s kind of fallen by the wayside. I’ve actually looked into writing groups and didn’t find much in my area (i.e., the suburbs), but I stopped looking partly because of social anxiety, so I’m hoping to start looking again ASAP. Thanks for the recommendations!

  • halsey-blocher

    Member
    December 4, 2018 at 9:28 pm

    I definitely stay in more during the winter both due to the flu season and the fact that I hate the cold. I agree with Kevin that it’s still important to get out some. Sometimes staying in to much can be just as bad for your health as a cold, just in different ways. The one place I rarely hesitate to go during the winter is called Turnstone. It’s a center for people for disabilities where I am a volunteer and a client in our adult day service (ADS) program. They’re very good about keeping it clean and we have a clear illness policy that staff, volunteers, and clients are expected to follow, so I don’t have to worry too much about catching anything while there. I go twice a week and love getting to spend time with everyone there. They have all really become like family, and spending time with them regularly is always an enjoyable and uplifting experience.

    • kevin-schaefer

      Member
      December 6, 2018 at 12:01 pm

      That’s really cool. It’s good to have in-person communities like that.

    • brianna-albers

      Member
      January 4, 2019 at 1:39 pm

      I agree with you that staying in can be just as detrimental as going out! I was recently in SC on vacation and I realized that my headaches and chest tightness weren’t as bad as usual because I was more active, so I’m hoping to find a balance between activity and safety this winter. I’m glad you have that community!

  • ryan-berhar-2

    Member
    December 4, 2018 at 11:09 pm

    I actually wrote a column a while back addressing this very topic. I’ll link it here. At the bottom of my column, there’s another link that will take you to another similar discussion in the forums.

    https://smanewstoday.com/2018/05/31/sma-challenges-make-social-media-essential-friendships/?amp

    • brianna-albers

      Member
      January 4, 2019 at 1:42 pm

      Great column, Ryan! So sorry to hear how your LDR ended – I haven’t been in one, but I’ve been in “situationships” that didn’t end well, so I feel your pain. Hopefully, both of us will find someone eventually!

  • deann-r

    Member
    December 5, 2018 at 10:42 am

    Like you, Brianna, I tend to not go out as much during the winter.  My main reasoning is I hate having to be bundled up.  Plus in the summer I can do more on my own.  Although I’m a self diagnosed germaphobe, it seems I get sick no matter what, so more often I just say screw it I’m doing the activity.  I just be sure to hand sanitize after.  I like Halsey’s rationale.  Find a group or activity you feel comfortable with and enjoy and participate in that.  Maybe a book club if you like to read.  It doesn’t need to be often.  Just often enough to not feel stuck in a rut.  Sometimes I think we can get too comfortable just staying home because it’s easy and safe.

    Another option is hosting a get together if it’s difficult to get out.  For a while my Mom and I would alternate (because ours were the only houses I could get into) hosting a craft day with a few friends every month.  Someone would pick a project and we’d work on it that day.  We’d decide what we would have for lunch and assign who would bring what. I was fun.

    • brianna-albers

      Member
      January 4, 2019 at 1:46 pm

      I hate being bundled up too! I’ve slowly started to figure out what kind of layering keeps me warm without sacrificing too much range of motion, but when I’m home I hang out in a t-shirt.

      Those craft days sound like a blast! I’ve recently started hosting bimonthly get-togethers with my D&D group (two of the members live in Illinois and Indiana), and it’s had an amazing impact on my mental health.

  • adnan-hafizovic

    Member
    December 7, 2018 at 6:39 am

    Like most of you in winter I rarely go somewhere,and because of that my couins , other family members and friends they come to me in my house.And that visits full my batteries.

    • brianna-albers

      Member
      January 4, 2019 at 1:46 pm

      I’m so glad your family and friends come to visit you! In my opinion, it makes things so much easier.

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