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… Read more

Yes, and it seems everyone is on board with it, which is huge progress. Hopefully everything settles down around here and we can move forward with the plan.

As some of you know, I’m usually at my grandma’s house three nights a week. Due to some family issues, my two very young cousins have also been there for a while, and one caught the flu. I can’t be at my Gma’s for the time being. These complications have totally messed up not just my schedule, but everyone else’s for that matter. It’s times… Read more

it definitely helps.

About the same as you. I had some fireball on New Year’s Eve. That’s some potent stuff lol.

He’s five I do believe. We get together every few months. They’re good people.

Thanks!

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.

Nothing necessarily stood out in particular, but again, it’s just nice to read those reminders. What strikes me about Shane is his willingness to put himself out there I guess you could say. With regard to girls or otherwise, he succeeds by going for it.

Hey everyone! Here’s a link to my newest column. The third in a series.

A Perspective from an SMA Father

It’s always nice to be reminded that we can, you know, do certain things in spite of our disability. Haha

Thanks!

She’s still so young. I hope she keeps that hope alive.

I don’t necessarily have any SMA related advice, but I think it’s super important to always look at a portfolio of the artist you’re considering. Sounds like you’re prepared in that regard though. I have two tattoos, a cross with clouds and rays around it (essentially one big one). For whatever reason, the clouds hurt significantly worse than… Read more

One healthier snack I love is cheese and grapes. I thought it was a weird combination at first, but it’s one of my favorites now.

The things I learn on the SMA forum. Haha

As I think I mentioned here before, I’m going to be the best man in my cousin’s wedding this summer. I’ve only been to two weddings that I can remember, and they were both ages ago, so I don’t have much experience. I’m really excited though. I haven’t heard anything about a bachelor party, but it’ll probably be some redneck activity like branding cows haha

DeAnn, that’s something I often think about—how everyone does everything slightly differently. It’s not necessarily even a bad thing, it just takes time to get used to all the subtle differences between caregivers. Even my family, whose been taking care of me for almost 23 years, have to be reminded of certain things. It’s just interesting.

Yes, same here. If I get up really early it throws me off for a couple days.

I usually wake up at 9 or 9:30, and it takes maybe 30-45 minutes to get showered and dressed etcetera. I basically never get up earlier than that. It sort of shocks my system if I do.

Thank you both!

Here’s a link to my newest column. I interview my Aunt.

My Aunt’s Advice for Optimal Self-care

Yeah I mean you don’t want to be too pushy. Hard to say. Best of luck either way!

This is always going to be problematic to a certain extent. Only having someone around when you need them is pretty much impossible. Like you said, gently remind people you need space. That’s all you can really do.

Great column bro. I definitely lacked confidence in high school with this. For example, I sat directly next to one of the most beautiful girls I’ve ever seen for half the school year, and didn’t talk to her once. This was partly just my introverted nature, but I also had this notion of “she couldn’t possibly want anything to do with… Read more

That’s such a bummer. The tattoo studios around here are either flat out inaccessible, or they’re old and somewhat inconvenient for wheelchairs. With the one i go to, I have to go through the back door. It’s a little annoying, because there’s this other business back there, but it works. Not sure why, but it seems like tattoo places are like… Read more

Thank you both!

Is there a particular reason you haven’t had friends do the “heavy caregiving stuff”? Or has it just not worked out that way? In my experience, those are the people I’m most comfortable with.

Maybe I’m a little unusual this way, but I don’t care about how my disability changes people’s perception of me. People can think whatever they want, and I’m not going to go out of my way to prove some point. I only concern myself with things I can control. What I do care about is how people perceive my character, which is something I can… Read more

Honestly, there are so many separate issues here that I’m finding it hard to react.

The broken femur stood out, because I suffered the same injury. I also thought it was cool how his cousin was basically his “nurse” at school.

Ironically, I sort of just referenced this on the chores topic, but if anything, I fall on the other end of the spectrum. The battle for me isn’t avoiding burnout, it’s finding the motivation to work harder than I do. If anything, I need to be pushed harder, not throttled back. I don’t want to come accross as lazy. I mean, I do get my work… Read more

I don’t recall ever having chores as a child, but I actually think it’s a good idea. Maybe I’m going too deep with this, but I think chores—however minor they might be—can help instill a work ethic and accountability. I can only speak for myself, but I would imagine people with SMA are more prone to having a weaker work ethic, because we’re… Read more

I’m still looking forward to seeing it

Hey everyone, I’ve started a series on my column in which I ask various people for advice, and see how/if at all, SMA affects their answers. Feel free to share your thoughts on this!

Free Advice Worth Paying For

I have a good sized room, and it’s nicely located in the corner of the house. In the old house, my room was right smack in the middle of the house, which was annoying.

My mom and grandma have always been quite overprotective, but in different ways. My mom has always been petrified of germs. While yes, germs are extra dangerous for me, it was at a point where she wouldn’t let me do things like go to Starbucks with MY DAD (not some irresponsible kid or something) during cold and flu season. This was even when I… Read more

Having my own space is something I’ve always craved. In the house I lived in for 16 years, I didn’t have much, because it was somewhat small for my five-person family. Since we moved to a larger house a little over a year ago, however, I have much more space. I also live at my grandparents’ house three nights a week, and while it’s… Read more

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.

I hope it got recorded. We requested it, but there’s concern it might not have been. I should find out later today. Thanks for the kind words, and good luck with your own ministry!

Check out Caseology on Amazon. I got a case for my iPhone 8 there for like $13. I’d say it’s a nice balance between being lightweight and protective. It also has a carbon fiber type look which is pretty cool.

Thanks guys.

The humor is awesome, because it sets the tone for the rest of the book. I wasn’t surprised by it, because I knew a little about Shane before I read the book. I like the irreverence, because it doesn’t depict a sense of doom and gloom.