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Maintaining a Social Life When You Have SMA Requires Creativity
Hey everyone, here’s Alyssa’s latest column: https://smanewstoday.com/2019/02/01/planning-maintaining-social-life-involves-creative-thinking/
This I could definitely relate to. Especially when it comes to going to late-night parties and such, I’ve had to develop creative solutions and coordinate multiple rides. Like Alyssa, I hate asking my parents for rides on nights and weekends, and I feel guilty when I do. I can usually get friends to drive me, but sometimes that’s not an option.
Could you relate to this column? Do you have any similar stories?
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9 Replies
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The part where she says she envies the ability to just up and go somewhere is very relatable. It’s utterly exhausting having to plan every little thing out. Sometimes it’s like I have to move mountains just to go to Starbucks. Also how this has resulted in her becoming more introverted. I get that too.
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Yeah, just getting somewhere can be a hassle.
I’m curious though, has the JACO arm made it easier in this regard? For me, I never used to be able to go to a coffee shop or restaurant on my own, because I’d always need extensive help. With the arm though, I can get dropped off somewhere for several hours and be fine. If I’m eating or drinking something, I just need minimal help getting set up, and then I’m good. I usually go to Barnes & Noble about once a week on my own, and then hang out for a few hours. My mom drops me off, and I can go straight up to the coffee shop to get a drink or snack, and whoever’s working there helps me get set up. And I’ll usually read either on my iPad or have a small book that I can prop on my tray.
For me at least, I love being able to do little things like this on my own. It gets me out of the house on weekdays, and I get to just do something by myself. Just wondering if you could try something like that. It’s a good feeling. It is a little nerve-wrecking at first, but keep in mind that if you go to somewhere like Starbucks that’s public and has plenty of people around, there’s always someone to help if there’s an emergency.
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it definitely helps.
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Do you think you could give spending an hour or two at Starbucks on your own a shot? It really is little things like this that can go a long way. Brianna wrote about this in a recent column. It was the one about going to a movie by herself, and how it gave her confidence to try other things in her journey toward more independence.
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Yes, very relatable. We’ve done the vehicle swap thing before too. When there’s something I’d like to do sometimes I try to ask without asking, but it doesn’t always work out in my favor. For example, the bus service here doesn’t run on weekends or evenings (sucks, right?) so if there’s somewhere I want to go after hours it has to be within walking distance or I need to get a ride from Mom. Every year a local winery has an event called Grape-stomp. Over the years it’s gotten quite popular as they have entertainment, vendors, food trucks and more. I wanted to check it out, so I casually mentioned it was going on hoping there would be some interest. The idea got shot down pretty quickly. If I outright asked we’d probably have gone, but I didn’t want to go if she felt like she had to.
Another aspect that takes extra planning is time. When I take the bus, or even get a ride, I have to schedule a pick up time. Kind of puts a damper on activities, but I guess it’s better than not going.
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It’s really irritating that a lot of bus services don’t operate on nights and weekends. Those are the main times I do go out, as I’m usually at home working during weekdays.
Just curious, does your Mom ever let PCAs or friends drive your van? I know for me that helps tremendously.
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I’m not even sure if the agency I go through even allows PCA’s to transport, they have kind of funny rules about stuff like that. Even if they did it’s not really an option as our mini-van is also my Mom’s primary vehicle so it’s at her house.
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Agencies are really weird about what their employees can and can’t do. The one I just started working with for Saturday mornings actually allow caregivers to provide transportation, which I was really surprised by. I wish I could clone this agency and spread it out across the globe.
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We think too much about others, for example, I do not want to burden my parents and so on. So our problem is to do some small things like going to a coffee shop. We need to think more about ourselves and our needs.
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