[Sam VanNest]

Cariuma makes a shoe called the “ibi” that I’ve found particularly suitable to my needs as a person with FA. They’re relatively cheap (under $100), have really soft heel support (I tend to get blisters on my Achilles’ tendon from shoes with straight backs), are very easy to get on (I have really high arches, as most FAers do, and they’ve got a built-in loop on the heel), and they’re available in a bunch of colors.

https://cariuma.com/products/ibi-black-knit-sneaker-men

 

[Sam VanNest]

It’s probably a popular opinion but I’m fascinated by the Joker in The Dark Knight movie because his origin story, something that all superheroes/villains have, is always changing, always in flux. This, I think, is why the character is such a great foil to Batman. We all are familiar with Batman’s origin, but the Joker’s is unclear. “You wanna know how I got these scars?” he asks, always with a different story.

This lack of an origin story is something that I struggled with for years. With FA being so rare and unknown I often had (and sometimes still do) a shifting origin story depending on who is asking. “Why do you use a wheelchair?” they ask, and how obligated am I to give an honest answer?

[Sam VanNest]

I celebrate Charles Darwin’s birthday instead.

[Sam VanNest]

I agree with you there, Matt. Raising FA awareness is something I can get behind. I struggled with the fact that FA was so unknown, to the point that I would lie when someone I wasn’t close with asked why I use a wheelchair. It was easier than explaining/owning FA every time that it came up. That would be a great discussion thread, by the way: How do you explain FA to people who do not know? So, avoiding altogether or at least mitigating that whole interaction ritual is an issue that I see as important. But being a visible proponent for a cure is something I see as problematic.

[Sam VanNest]

So I met with the family last week and I think that it went well. We didn’t talk much about FA, which I had been reticent to do anyhow, so I appreciated that.

What we did talk about was A fundraiser in Annapolis that this family has hosted three years running. I’ve never been much for these kinds of events. I think that I actively avoided them, in fact, my rationale being that FA was only a small part of my identity. I didn’t want FA to define me.

I’m not sure how I feel about this now.

[Sam VanNest]

I will for sure tell them about this thread and the community here. Thanks so much, Shandra and Frankie.

I’ve never (until now) been active in any way in the FA community. I spent a lot of time and energy advocating for the disabled in general, but never felt compelled to reach out myself to other FAers. In fact I think that I actively avoided doing so. Not sure why.

Thanks again. Any other links/info/tips for my going into this meeting are really appreciated.

[Sam VanNest]

Thanks for the reply.

I’ll keep that in mind, about the randomness of FA symptoms and emphasizing its individuality.

I want to also show that there are twofold challenges to the FA diagnosis: the physical and the emotional. There’s not much to be done about the physical (I can remember being told by my Neurologist as soon as I was diagnosed that a cure and treatment was only short years away) and reconciling with these challenges is key to developing a better emotional response to FA. To live with the hope of some kind of treatment can be as damaging as any social impairment. I want to show that you’re only as emotionally affected by FA as you choose to be. I’ve surrounded myself with a community of friends who value me as a person first and acknowledge the physical struggles as an afterthought, not the other way around.

It probably sounds trite, but we (as physically disabled) are very lucky to live in a post—ADA (Americans with Disabilities Act) America, where even the physical nature of our disability is assuaged, and this in turn has bred more positive, inclusive notions toward disability. Accessible physical environments have led to a more enlightened understanding of disability. I really want to emphasize that as well.

I hope to leave a positive impression, is what I’m getting at. One that shows how a life can be lived in spite of and not because of FA.